50 for 50 Project

As part of our 50th Anniversary celebrations, we'll be sharing 50 people's stories of psoriasis and psoriatic arthritis.

We're now into our 50th year here at the Psoriasis Association! A key part of our work over the last half a century has been to raise awareness of psoriasis and psoriatic arthritis, and help give a voice to people who live with both conditions. As such, we thought 'what better way to celebrate our 50th year than by sharing 50 people's stories of psoriasis and psoriatic arthritis?'

You can read the first stories below. We'll be adding more throughout our 50th year so keep checking back, and keep an eye on our Instagram page too!

If you'd like to take part in the project and share your own story, you can find out how to get involved here.

Aimee's Story

Hi, I’m Aimee Grace. I first noticed small patches of psoriasis at the age of 14. For the last 18 years my psoriasis has always been contained to a few small patches on elbows and scalp. Then in February this year, after contracting tonsillitis in early January, and after a good friend of mine hurting me and causing me a lot of stress, I began getting a few little spots on my forehead. This was initially diagnosed as chicken pox until 2 weeks later when the spots rapidly spread and I went back to my GP to be informed it was guttate psoriasis.

I immediately did my research when I got home and realised it was not too common on the face and I broke down. I am only 32 and single and the idea of looking like this for the foreseeable future was gutting. I felt ugly. Who would love this face?!

My psoriasis is all over my body and face, it affects some places more than others. My skin is constantly burning, itchy and tight. To some people psoriasis seems so trivial but it isn’t, it's agonising and uncomfortable and I can totally understand why some people struggle with mental health issues because of it.

I was extremely lucky, after only a couple of weeks I found a strength in me that made me share a photo on my Instagram account. I knew I physically couldn't hide my face, so I had no choice but to face it head on! I couldn’t believe the kindness I received, so much support and love out there. Do not get me wrong, I’ve suffered horrendous abuse, including death threats, with some people telling me to take my own life. But the overwhelming kindness from 95% of people completely outweighs the bad.

Since then I have received many private messages from other psoriasis warriors who cannot leave the house and some who want to commit suicide. They tell me I have helped them to face their fears and stay strong. This is my calling, I just want to keep supporting others and helping them to battle through and find their strength.

I have been extremely lucky when it comes to treatment. My GP overloaded me with prescriptions - I am currently using 15 prescribed ointments and lotions - so my amazing company offered to pay for me to visit a private doctor. 3 weeks later I’m in hospital being told that the waiting list even privately is 4-5 months, but due to the severity of my condition I have been moved to the top of the NHS list and start my light therapy next week! So after expecting to pay £850 and wait 4 months, it’s now free and next week! This makes me so happy. Fingers crossed!

Alicja's Story

My life with psoriasis had started a week before my 18th birthday and the first thought I got in my head was "I cannot be a blood donor”, which was my dream for many years. I cried because of it, not because I heard I’m ill. Not even one member of my family has psoriasis, so everyone was shocked when I got this information from my doctor.

At the beginning, there were only a few spots on my elbows (of course they gave me steroid creams) but with time they started to spread.

I didn’t know where to find physical and psychological help. I know that I’m stronger than my illness but still, there were moments when I felt like a loser because of ps. My hobby is cosplay, so it was quite obvious that my appearance means even more to me. I started to hold back with my hobby.

Last year I started a second major of studies and this was my breaking point. I work so hard for everything, but my psoriasis was in the worst state ever. In the morning I had to wait to move my arm because everything was hurting and cracking so much. I got used to itching and bleeding. I decided to change it, give myself some time.

I gave up on my second major. I started a diet, new way of thinking and it's working. Of course, not every spot back to normal and I have to wait for results, but I was getting better! I came back to cosplay, even became a Polish representative in the European cosplay contest, C4 2017.

Nowadays, I am an active member in a Polish support group, and have had many positive comments on my post about my hobby and “not giving up”. This is why I started the social project #JestemBiedronką which means "I'm a ladybug" (something like a cute nickname for psoriasis warrior). I want to show people that they are beautiful and they can achieve their goals.

We did 2 photo sessions with Szkoła Kreatywnej Fotografii in Cracow, and now we are waiting for our first exhibition - 14th May. We are more than amazed by responses on our fanpage - more than 80,000 people have seen our content! Not only in Poland but around the world. Even if we are just a little drop of water in the process of changing social perspectives of psoriasis, we are really glad we did it. This project has changed me and given me more strength than any other treatment, even if my skin looks worse then half a year ago, I'm accepting it.

Photo credit: Agata Lazar, Make up: Maja Bławuciak 

Andy's Story

My name is Andy and I’m 52 years old. I was diagnosed with psoriasis when I was 12 years old. My psoriasis started as a small patch on my left arm. I was seen by a doctor for a few months before being referred to a Dermatologist whom confirmed the diagnosis. I was prescribed some ointments and creams and told to get plenty of sunshine on the affected skin.

As time passed, the creams became ineffective and several more patches appeared all over my body. By the time I was 16 years old I was very self-conscious and depressed. All my friends at the time were enjoying parties and beginning to have relationships. My life at the time had become very isolated and I had shut myself away from the world.

I remember my parents taking me to the seaside one summer. On the beach people stared at me and I became very upset. I locked myself in my father’s car and refused to come out. At home I would cover up all my affected skin and stay in my room. All my school work suffered and I argued with my parents regularly. I became very lonely and isolated.

I was given another appointment with a Dermatologist. This time he discussed the use of oral treatments to reduce the skin coverage. I began taking the medicine and for a few years my life seemed back on track. I was able to get out more and started working for a company that sponsored me to return to college.

Life at this time was much better. I enjoyed my life more and began going out and socialising. Then early on in my twenties I experienced the first of many severe flare ups. I began intensive cream treatments daily and the oral medicines were increased.

I was working in a hospital at the time with long shifts and difficult work. I met someone and for the first time was enjoying being in love. Then one day I woke up and I was feeling very ill. I had to take time off work and go for various tests. It was decided to stop the oral treatment to give my body a break.

The result then was a massive flare up with 80% of my body covered in psoriasis. I had a fever and my body temperature increased. The psoriasis became inflamed, scarlet red and very sore. I collapsed and was admitted to hospital as an emergency patient.

I was to remain in hospital for 3 months while the doctors tried to stabilise me. I lost my job and eventually my new relationship ended. I became extremely depressed and angry with my life. The result of this was to be the first attempt to end my life.

I did eventually stabilise with a lot of medical help. My life then became an endless cycle of topical and oral treatments. I did manage to return to work for a while. But I ended up needing a lot of psychological treatment and my medicines needed reviewing regularly. The strong medicines eventually damaged my liver. I still have to visit a liver doctor yearly to check on the status of the damage.

I was able to work for a long time until I collapsed at work one day. I had been experiencing a lot of joint pain and extreme tiredness at the time. I thought I had picked up flu bug. But this episode was to last for several months. I was eventually so bad I took to my bed and remained there for two years. I was referred back to the hospital several times before a Rheumatologist diagnosed I had psoriatic arthritis.

None of the oral medication worked and, after losing my job, I became unable to work. I had periods of time when I was better but no one would employ me. After about 200 employment rejections my depression returned and I became isolated again.

After a few exhausting years of struggling, I was finally accepted to try a new treatment. I began using biological treatments which gave me a better quality of life. I experienced many side effects and a lot exhaustion during this time.

During the last 10 years I have used several different types of biological treatments. My life at the moment is much better with the help of biological treatments. I still suffer with a lot of daily pain and awful tiredness. But without these treatments I would be much worse off.

I used to hate psoriasis and psoriatic arthritis. They have made my life very difficult and often unbearable. But more modern and effective treatments have eased my burden. I still have plenty of bad days but I have become much stronger in my mind. A great turning around point for me was to eventually realise that I can love and accept myself with this condition.

The Psoriasis Association has reached 50 years old on its mission to tell the world all about psoriasis. It has achieved great things along the way. I’m glad it still exists to promote a much better understanding of this awful condition.

This is my story about living with psoriasis for nearly 40 years. I hope by telling my story it will give those that read it a better understanding of what it is like to live with psoriasis.

Anne-Marie's Story

I was first diagnosed with guttate psoriasis when I was 3 years old - 50 years ago. It isn't isolated to any one part of my body but can appear anywhere.

Back in the early days the treatment was very basic, betnovate scalp application and coal tar ointment. This treatment continued through my school days and I lived with taunts of 'flaky, scabby and spotty'. Nowadays this would be classed as bullying, back then it was something you got used to.

School life was difficult and as I hit my teenage years I would find any excuse not to do sport because I didn't want people to see my skin. The emotional support wasn't there then and following my O levels I had my worst break out and was admitted to Hull Royal Infirmary. This was to be the first of many visits as an in-patient. What I didn’t know was a newly qualified nurse with 2 small boys would be a part of my psoriasis journey to this day and she is now my specialist nurse.

Over the years the treatments have progressed and I've tried everything, steroid creams, UVA (which I still have), PUVA, ciclosporin and methotrexate all to no avail. The only time in 50 years that I have been clear was through both of my pregnancies.

In 2008 biological drugs were introduced to me and they have changed my life. All has not gone smoothly. I started with Etanercept but this stopped working after a while so I moved onto Humira. This also stopped working. Next step was Cosentyx but this made me feel generally unwell. I'm now on Otezla and although not 100% clear I'm not far off and feel the best I have for a long time.

The psychological effect of psoriasis is immense, not only for the sufferer but for families and friends. Until you live with psoriasis you can never understand how time consuming the management of it can be. Moisturising alone takes up a massive amount of time daily, let alone the application of creams.

We are surrounded by pictures in magazines and on the TV of the 'perfect body'. Learning to live with what the media perceives as imperfect puts immense pressure on psoriasis sufferers, but a social media group called 'get your skin out' has encouraged me to put my skin out there. After all nobody is perfect and beauty is skin deep.

Learning more recently that psoriasis is an auto-immune disease has made it easier to deal with. I know stress aggravates it and I know rest is important to help keep it stable. Above all else psoriasis is part of me. I have never accepted it. I have good days and bad days and I am finally learning to live with it. I couldn't do this without my family, my specialist nurse and the dermatology department of my local hospital.

  • Aimee
  • Alicja
  • Andy
  • Anne-Marie

Anonymous Story

I've tried most things from creams and ointments, to light treatment (UVB and UVA), to oral medication (tablets), to biologic medication (injections).

I first noticed signs of psoriasis about 6 years ago. Small blobs of dry skin started to form on various parts of my body. Initially I went to my doctors and was given some creams to try. The creams and ointments have never worked for me! As a child up until this point I had very clear skin, not even a spot in sight, so to see these patches forming was a massive shock. My psoriasis got worse by the day and was becoming painful.

At this point I was referred to the dermatologist at my local hospital. I am still under their care today. Various assessments of my skin were conducted, they felt intrusive and uncomfortable. I was in my early teens at this point so being in a hospital was the last place I wanted to be.

For about another year I was given different creams and ointments to try. I have plaque psoriasis and it was everywhere, on my arms and legs from top to bottom, on my back, on my face, behind my ears, in my scalp, it was even on my hands at one point. Being a teenager in secondary school this was the last thing I wanted.

After all the creams and ointments did nothing, they recommended I try UVB light treatment. I did this three times a week for a number of months. As you can imagine it was very draining, however it did work to a certain extent. My skin got better and what was thick plaques turned into red marks which weren’t painful. Eventually I was told to come off light treatment and at this point I thought I was cured. I was so wrong. After a few weeks it came back very bad again and in places it wasn’t before.

A number of months passed and I was told to try UVA light treatment. I tried this too. I was extremely sceptical however I was prepared to try anything to relieve the pain. My skin was so bad I’d have to change my bedsheets sometimes daily because my skin would bleed. I had to get dressed in a separate room for sports at school. All of this put together was mentally and physically draining.

UVA did work a lot quicker and I did this for many months too 'til my skin got better. Again, the same thing happened once I stopped treatment, my psoriasis came back again. At this point I did not want to go back to the hospital however I was encouraged to go and it was suggested that I start methotrexate (tablets).

I was on methotrexate for about a year, however the side effects at this point were becoming severe so I came off it. For months I was medication free, however in a month or so my skin got worse and worse as I was not treating it. At this point I had done my GCSEs and was starting my A levels. I had to wait for my skin to get to a certain stage before it could be ‘assessed/graded’ again. Personally I found this very dehumanising as they were measuring my pain to a number on a page from what they could see.

When my skin got severe again I had to fight for something other than oral medication as I did not want to go back on medication that made me unwell. I was still classed as a child at this stage so a lot of medication was age restricted. Eventually they agreed to let me start Humira and self-inject. Although this may seem scary I was at the point of giving anything new a try as I had fought for years already. I am still currently on Humira and it works very well for me! It has been a life saver; my skin has become clear with just a few patches remaining! I still have check-ups and regular blood tests with the dermatology unit.

One thing I would say to anyone is don’t let your psoriasis defeat you. It is draining however you have to fight for what you feel you need! Despite the challenge of living with psoriasis I have achieved a lot. I passed all my exams and am studying at university now, so you can still achieve; you have to want to though!

Sorry this is long but my journey has been long and I’ve tried so many things! I hope you can gain something from me sharing my story!

Anonymous Story 2

I am a 50 year old lady. I was not born with psoriasis. Nobody in my family has it. I guess I got it because I was bullied at work. It was a very stressful time and I was so unhappy. I had this colleague who was no good at her job but as she was insecure, she spent her days attacking me. My boss was friends with her and duplicitous. Looking back, I wish I had left the job but as I have never been in that kind of situation before, I did not have the courage to just up and leave.

Psoriasis developed very quickly with patches on my spine and over my body. Then it was on my scalp. It was itchy. My hair started falling out. I hurried to a big department store and bought a wig. It was expensive and it did not suit me. I wondered what my colleagues thought. Nobody commented but I hated wearing a wig. I was constantly worried that it would fall off and it was very uncomfortable in hot weather. A few months later, I graduated onto tailor made real hair wigs. That fitted better but was still uncomfortable.

I tried going to the Dead Sea. I went on my own to the Jordan side for about 10 days. That was not a relaxing experience as one had to spend quite a lot of time sunbathing or soaking in the sea. It did not work for me.

I was given lotions and potions, UVB therapy and methotrexate. None of that worked. About a year later, I developed psoriatic arthritis which made it hard to walk. I certainly could not run or dance. Those were the dark days. I had dull pain because of the arthritis.

After about 4 years and trying different drugs, one day I met a new doctor at the hospital who said that he would take over my case. His name is Dr Adam Friedmann. He encouraged me to try new drugs and when they failed, he encouraged me to try another one. I tried the biologic, Stelara, which did not work for me. He encouraged me to try Cosentyx which nearly cleared my problems. I now have over 95% clear skin and I can go swimming without being self-conscious about my appearance. My psoriatic arthritis has gone and I no longer have to wear a wig.

I am very grateful to Dr Friedmann for his care as my dermatologist. I was so fed up after the first biologic failed that without his encouragement, I would not have moved onto the next one (which did work for me).

I have been on Cosentyx for over two years now. I accept that it is a new drug and there is not a great deal of patient data as to its side effects. However, I take the chance as I would much rather take the risk and minimise the effect of psoriasis in my life.

Benjamin's Story

Soo... It all started back in 2009 when I was in Maths, I was just 15 at the time. I noticed my head felt quite itchy, so not thinking much of it I gave it a scratch; as I scratched more and more I noticed what I thought at the time was dandruff all over my workbook. I felt really embarrassed as it was clearly noticeable when I checked my head in the mirror. That night I got home and asked my mum to check my hair... she said it looked like something called ‘Ringworm’. She then booked me a doctor’s appointment for the following week.

When I saw my GP, he said it was something called scalp psoriasis, and that it could be controlled but wasn’t curable. I remember thinking at the time I wish it was that blasted worm thing my mum had previously mentioned. I managed to control the scalp psoriasis with ‘Betnovate scalp application’ and, even to this day nearly ten years later, I still use it now and then when it appears to get sore.

A few months after discovering I had scalp psoriasis, I noticed a few pink patches on my arm and on my torso. I went back to the doctors and he confirmed that those were also patches of psoriasis, and gave me what was then ‘Dovonex Cream’ (now only in ointment form in the UK I believe), to put on the plaques. The patches didn’t appear to go down much, however it managed to control some of the patches over the next four or five years and reduce some of the redness of others.

At the age of 20 I went back to the doctors as I was unable to control my psoriasis with ‘Dovonex’, so was then given ‘Dovobet gel’. I wasn’t given any instructions other than to apply it once at night. Unfortunately, being a bit naive at the time I didn’t do any research and wasn’t aware to have a break from using it. After using it constantly for two, maybe two and half years I was having a constant flare up. I managed to get a doctor to refer me to a dermatologist.

After waiting 5-6 months for the appointment, I was put back on Dovonex and then ‘Enstilar foam’ (and also told my severity of psoriasis is mild and that I should cheer up). Unfortunately for me the Enstilar foam also made me flare up the moment I came off of it. I then tried to get another dermatology appointment as I wasn’t happy with the dermatologist that I saw. I was given an appointment but it was another 6 month wait. In the meantime I paid to go privately but was told there wasn’t anything that they could do.

I eventually got round to seeing a new dermatologist about four weeks ago... finally I feel like someone actually cares and listened to what I had to say. I’ve been referred for UVB treatment twice a week, and am currently on my fifth session. I haven’t noticed much improvement yet but I’m hoping it’s still early days.

I would like to thank the Instagram community, because without being able to speak to others I wouldn’t have been able to keep sane at times. My wife is very supportive, however it’s nice to speak and hear from like-minded people. I recently set up my own Instagram page to share my journey with others: @benjaminpsoriasis.  

Beth's Story

When I was told I had psoriasis, I had no idea what it was or even how to spell it. All I knew was it was something to do with my immune system, it was giving me tiny, red blotches all over my body and that there was no cure. At 22, I had a lifelong disease that I was going to have to learn to manage – the future suddenly looked a lot less rosy and distinctly more red and dotty (and itchy!). My psoriasis appeared all over my body during my final set of exams at university so could’ve been triggered by stress but, with no family history of psoriasis, I was totally lost.

After almost a year of my skin getting progressively worse, I had been through steroid withdrawal, many dismissive GP appointments and the horror that is winter with the world’s driest skin. I eventually got a dermatology appointment at the local hospital and was put on the waiting list for UVB light therapy treatment. This was when I came across the psoriasis community on Instagram and the #getyourskinout campaign, and my views on my psoriasis completely changed – I wanted to embrace my skin just like all these other people were doing. I realised my happiness was not based on how clear my skin was but the difference I could make by sharing my story.

I’ve had psoriasis for two years now and have since completed two bouts of UVB light therapy which has been a huge help in keeping my psoriasis under control. Psoriasis is all about trial-and-error and finding treatments that work for you and your life, as well as being open to creating a new lifestyle that incorporates your skincare and health needs. I’ve found that exercise is a huge help – I joined the local dodgeball team and this has helped boost my mood, confidence and energy levels (I really struggle with fatigue and complete lack of motivation), as well as pushing me to continue to show my skin.

I’ve also realised how important it is to educate yourself about psoriasis and share this with others. As a journalism graduate, a blog was always on the cards for after university but I never imagined it would be focused on psoriasis! I created Blotch (blotchblog.com) as a creative outlet for me to keep track of my skincare and help with my mental health, and to support others who might have felt lost and alone, just like I did, following a psoriasis diagnosis.

  • Anonymous
  • Anonymous 2
  • Benjamin
  • Beth

Charlotte's Story

It feels like I have had psoriasis since the day I was born. I do not remember having a single day of my life without having to check for flakes on my clothes or a single holiday without a suitcase of magic potions in my bag. I am currently 25 and have tried most treatments. My psoriasis has a mind of its own and I’ve grown to accept it and its flamboyant nature.

I have never let my psoriasis define who I am or govern my life. The first time it ever stopped me doing anything in my life was when I wanted to join the RAF. I was angry, I felt as though they did not understand the condition, they had no right to preclude entry because of the condition! Did they truly understand? If they did, I felt as though they would have seen past my skin.

Anyway, to cut a long story short, after a lengthy conversation with a recruitment officer they finally made me understand by asking me that ‘If I had none or ran out of medication whilst in the field, would I be able to continue?’ I answered, 'yes!' However, I suddenly saw it from their point of view and thought that maybe becoming a firefighter would be better!

I try to think positively about my psoriasis and sometimes forget I even have it. However, I cannot deny that it does mentally affect me if I am stressed or upset about anything, my skin knows before I do! I get most upset when I hear distressing stories of other people suffering with the condition. My heart hurts and I just want to do something to help. It’s not right that people are suffering in silence, the general public should know the damage their looks can cause.

So, I am doing something to help! I am currently organising an expedition to climb Mt Kilimanjaro with others who have the condition. To show the world that yes, we have psoriasis, but do not judge us by our skin, judge us by our strength and determination to overcome our trials and tribulations! There is much more Beneath the Skin!

If anyone would like to know more about the expedition, they are welcome to contact me. 

Emma's Story

In 2008 I started University, after 2 years of throwing my life away. I got on to the Photography degree, even though I wanted to study Film but, in my head, I assumed I wouldn't be able to get on to that course - I had minimal to no self-confidence after messing up college and then resorting to working jobs I hated whilst drinking my life away. As it turns out, after messing up my first year on photography, I managed to get on the Film course, so it all worked out lovely... Well, to a certain extent.

One day, during my first year of Uni, I woke up to find a strange rash on my arm. As I was living in halls I jumped to the conclusion that it may be Meningitis, even though I've had all my vaccinations. After panicking on the phone to my Mother, I booked a doctor appointment. When I woke the next day, the rash had spread all over my body... Now I was really concerned. A few weeks before I had been laid up in bed with tonsillitis, a kidney infection and conjunctivitis.

The first doctor I saw sat, flicking through Google to then respond with, "Yeah, I don't know what it is." This resulted in me feeling more panicked and as though I had some new illness which was unknown to any doctor. I decided to sign up as a temporary patient back at my family practice. The doctor looked at my skin and immediately knew what was going on. "Yep, you have Psoriasis."

I was relieved that I had been given a diagnosis, but I had no idea what it was. So, this was 10 years ago, my first year of Uni, young and full of life and trying to get on with things. I was informed that it was a "skin condition" and that certain gels and creams could sort it out. It's funny looking back now, and even though I am still learning more and more about it, I have a much better knowledge of this disease.

As mentioned, I was told it was a skin disease, and although the problem is visible and affects the skin, it is so much more than that. Psoriasis is actually a common, chronic, genetic, systemic inflammatory disease, but if you look online most of the time you will see it being described as just a skin disease. Yes, to a certain extent it is, but psoriasis is more than skin deep.

It is characterised by symptoms and signs such as elevated itchy plaques of raised red skin covered with thick silvery scales, which, as time has gone by has become a lot more obvious on myself - and is also why my blog name is RED SILVER MOUNTAINS.

What I Knew Then vs What I Know Now

I started my blog a few years back after I started to gain more of an understanding about psoriasis, and since then I have learnt so much more. I originally had a load of lotions, moisturisers and topical creams thrown at me, and the steroid based ones worked a charm. However, you can only use them for a certain amount of time.

I then started UVB Light Therapy which was fantastic. My skin completely cleared up and I thought, 'Yes! I'm all good now!WRONG!!!! It came back 10 times worse and I was really struggling. I had UVB again and the results were just as good as the first time. Then, after a while my skin started to get worse again. I never knew why. I thought I was a rare case and that I was destined to be covered with psoriasis forever. There's no cure, but there is a variety of treatments. What I do know now, which I didn't know for so long was about the inflammatory side of psoriasis.

I have tried SO many treatments, and this year was close to starting Methotrexate - a DMARD (disease-modifying anti-rheumatic drug) which is also used as a chemotherapy agent and immune system suppressant. After having to have many blood and liver tests, and a good think about my health in general, I decided not to start it and instead give UVB light therapy another go.

The reason for this? There's a few really:

  1. I have already lived on different types of medication for most of my adult life and didn't want to add to that.
  2. I have learnt so much more about psoriasis from when I first had UVB treatment that I am now aware that it's more down to how I look after my body internally than anything else.
  3. Methotrexate is pretty hardcore and can have horrid side-effects, not to mention that you cannot conceive when taking the drug (not that I'm trying to right now).
  4. I have some inflammation on my liver and Methotrexate can/will make this MUCH worse.  

This summer I have been very active, I was carefree about having my skin on show and the sun really did it wonders. It has only been the last week or so where it has started to flare again and my joints - mainly my back - are in agony and I am struggling to get around. (I'm still waiting to have more tests to see if I have psoriatic arthritis).

Today I went to have my UVB light therapy test strips done, and all being well, next week I will start my course of treatment again. It's amazing how things seem to come full circle.

10 years ago, when I first started Uni is when I was first diagnosed with psoriasis. This week I return to Uni to study an MSc in Marketing and I start another course of treatment. Even though I am currently in agony and very stressed, I am so determined to do well on my course and look after myself inside and out.

I won't be cured, but hopefully one day I can look forward to a world where someone has managed to crack it. For now, I can keep raising awareness, look after my mind, body and soul, and go back to Uni with more confidence ready to take on the world.

And so, the Flaky Student returns.

Ffion's Story

I've had psoriasis since I was 15 years old. It started on my scalp. For a while my parents and I just thought it was dandruff, however a few days before Christmas in 2007, I found a big patch, completely raw, seeping, itchy and painful behind my ear. I was diagnosed with psoriasis the next day and have had patches somewhere on my body ever since.

By the time I was 16/17 it was everywhere. I was having treatment in hospital 3 days a week, a combination of UVB and strong steroids. It helped a little, but it became clear that the cause of my psoriasis was stress. I’ve always been very shy and I always keep my feelings hidden, I keep everything inside.

Balancing hospital and school was difficult. Other than a couple of teachers I didn’t feel very supported by my school, other kids didn’t understand, many would throw nasty comments, although my closest friend always knew, and still does, how to make me laugh and feel better. I don’t really remember those years with much fondness, as the stress of everything was just causing my skin to flare even more - it was like being in a vicious circle. However, I do have some wonderful memories with my parents from that time too - going for lunch with my mam after treatment, and going for walks on the beach with my dad. The beach and the ocean has always been my haven.

I’ve tried a lot of different treatments over the years, like so many others who’ve written their stories, and I’ve finally found something that works for me.

My psoriasis has never been something I’ve really discussed openly, other than with family and close friends. It had a big effect on me mentally when I was younger, I’d find myself feeling very low. When I get a flare up I still feel myself getting quite low and quiet and I still get very emotional whenever I discuss my skin. I don’t know if reading this will help anyone else, I really hope it does, but making myself write it has helped me a lot.

I still have psoriasis, I know I’m never going to be completely clear, but it’s much milder now. I go through flare ups but I’ve learnt how to handle it. I’m very lucky to have an amazing family and fantastic friends who can spot a problem and signs of a flare up often before I do!

Over the last few weeks my skin has gone through a bit of a flare up, even though it’s not too bad, it still has an effect. Even though it’s not great at the moment, I know if it wasn’t for my family and friends, being able to talk to them, trust them, laugh, (and VERY often) vent to them, I’d be much worse. So if anything, I’d like to take this opportunity to thank them for everything, from the bottom of my heart.

Gemma's Story

My name is Gemma and I have had psoriasis for 31 years. I think...

I thought I knew my psoriasis story. I have been telling it for years. I developed chicken pox when I was six and the spots turned into plaques.

The only thing is, that was not entirely true.

Last month I was interviewed for my own podcast, The Psoriasis Podcast, by Russ Cowper (who writes amazing poetry about living with psoriasis - see his '50 for 50' story).

During the interview Russ asked about my psoriasis treatment history and, after fudging through the answers, I asked my mum.

She told me that she suspected I had psoriasis before the chicken pox incident. It was in my hairline and on my scalp, but she preferred to live in optimistic hope that this was not the case. She herself has psoriasis so she knew what the prognosis would be.

Chicken pox flared my psoriasis, but more than I had known. The scalp psoriasis was so severe my hair fell out and my mother eloquently describes my scalp as one enormous scab, like a cap that could be lifted off with the remnants of my hair. My joints were so swollen I was unable to put on my own socks and I was hospitalised several times, not the one singular occurrence I remembered.

This highlights something that has become apparent to me in the last three years. In psoriasis care - communication is everything.

How many times have you replied to the question ‘Are you O.K?’ with the answer ‘Yes. How about you?’ when that very morning you ate chocolate for breakfast, because getting dressed in a jumper on the hottest day of the year brought you feelings of despair?

I did not ask my mum about my psoriasis as a child because I did not want to upset her. I felt that reminding her of the difficult emotional challenges she must have faced as a parent having to leave her 5 year old daughter in hospital (yes I got the age of onset wrong too) would be unfair, and yet, as a parent myself, I would be upset to find my child was holding back when they needed something.

This is why I am a fan of online forums and psoriasis advocates on social media, it is so much easier to talk to other people who know what you are going through. Psoriasis is different to other problems that affect the skin. Yes we can commiserate on the challenges of living with visible skin problems with someone who has an outbreak of blackheads. But at its core, psoriasis is so much more than a skin condition. I find it hard to tell friends that I am having a hard day, because my skin is cracking when I walk and I have nothing to wear, because in the true essence of friendship they rally around and tell me how great I look.

In the psoriasis community I know that the same comment will elicit comments of support. People saying ‘I get you’ and letting me feel those emotions instead of trying to brush them away to make me feel better. Reminding us that tomorrow is a different day, that we are together for the highs and the lows. That together we are a team. Together, we never need to be alone.

  • Charlotte
  • Emma
  • Ffion
  • Gemma

Georgia's Story

I've had psoriasis since I was 15, but it’s hard for me to remember a life without it. It’s always been by my side in some way; it was there when I when I sat my exams, when I went to prom, when I learnt to drive and when I started University! Whether it’s one little patch behind my ear that doesn’t seem to want to go or entire flare up that can cover most of my body – it never fully leaves! I used to find that really difficult and frustrating, I’d spend nights stressing over why it wouldn’t go or why creams just wouldn’t work! I would try every tip under the sun in an attempt to attain the perfect skin I was seeing plastered around mainstream media every day and it’s taken me 6 years to realise that that really isn’t necessary.

I have always had dry skin, ever since being a baby, and I knew that my biological Dad had strange patches of thick, white skin on his elbows but I never thought anything of it. When I was told I had eczema in primary school, I let that blow over and took it in my stride. As far as I was concerned I was just a regular child – I just had to moisturise! Everything changed around that time.

In my last year of primary and into my first few years of high school I became a target for bullies. I stood out because I didn’t comply with social norms. My clothes were different and I didn’t bother styling my hair when others did. When girls my age were starting to get nice school bags and learning how to use makeup I was quite content just being me. I became a target both in and out of school. In fact, I distinctly remember a voicemail I received off an anonymous number in year 9 which told me that “no boy would ever come near me” because my “nose was massive and I wore a frickin’ Gola bag”. It was around this time that things really changed.

The bullying had led to some quite severe confidence issues for me, I had become incredibly withdrawn and was upset to look in the mirror. I tried to keep up with trends and ended up having to seek therapy as I was getting changed up to 6 times each day before I could leave the house. That was when I woke up with blemishes. I’d had small patches of Psoriasis on my elbows before but thought nothing of it as I hardly noticed them – but here I was, aged 15, looking into the mirror and seeing red patches appearing on my face. To the bullies’ delight, I would wear thick, dark foundation to cover them and my Mum quickly took me to the doctor – that was when I found out I had psoriasis. On my face, my chest, my scalp and in my ears. I remember the doctor asking me if I had recently been under any stress or upset. Thankfully, no-one seemed to notice at all and a little bit of steroid cream easily treated it and it disappeared after about 2 weeks – so I thought.

In my first year of sixth form it came back. Thick, aggressive plaques over my arms, back, legs and face. This time it really hit hard. There was days I refused to go in. I remember going into my Drama class and people asking what it was or if I was ill. That was the first time I told anyone that I had psoriasis. To my surprise, people were supportive – my friends would tell me that I looked pretty, like a leopard, and I found some peace in that.

When the psoriasis began to spread and the creams stopped working, the doctor sent me to a dermatologist who referred me for phototherapy. It was draining having to drive for an hour 3 days a week to stand in what just looked like a sunbed for 3 seconds (though this time gradually increased) but it worked unbelievably well. After about 6 weeks, the psoriasis was hardly noticeable at all and I was happy with my skin again.

It remained relatively clear for 4 years after that, until just after my 21st birthday when I noticed a small patch appear right in the middle of my chest that didn’t seem to want to go! I went through numerous big life changes and emotional upheaval and I knew what was coming. I am currently in the most severe flare I have ever had. I have psoriasis on my chest; arms, back, stomach, legs, scalp, neck, ears, vagina, breasts, nipples, bum – and I have no reason (or way) to pretend I don’t. This led to me making the decision that has changed my entire life!

In May, I created an Instagram account: @meadowsonmyskin – to document my journey with psoriasis. I aimed to uplift, inspire and empower other people like me who I knew would be suffering. I now reach out to others and set the best example that I can whilst showing that it’s okay to have a skin condition. It’s okay to not look like media models! I’m currently being referred for my second round of phototherapy which I hope will clear up my flare – but even if it doesn’t? Never mind. That’s my new attitude. I’m not ashamed to be me, I’m not ashamed of my skin. I have psoriasis, but psoriasis doesn’t have me.

Janine's Story

My name is Janine Price, I am 42 and happily married, with a son aged 20 and a daughter of 12, and we live in Wales.

I was diagnosed with psoriasis at the age of 22 during my 1st pregnancy. When I first went to see my doctor I was told it was chicken pox. Two weeks later I returned and my usual doctor had returned and I was diagnosed with psoriasis. Treatment during pregnancy was difficult and it got much worse. My problems were scalp psoriasis, and plaque psoriasis on my knees, hands,  elbows and a few other places, along with nail psoriasis.

I have always worked since leaving school and most people I have worked with have been understanding of my condition but others made comments and remarks which have been upsetting. One day I put fuel in my car and went to pay and the cashier said ‘what’s wrong with you, is it contagious?’ and then pulled her hands away and I had to slide the money for payment while she reluctantly touched it.

I always enjoyed swimming, and was keen for my children to develop this life skill at a young age but eventually I gave up taking them swimming locally and enrolled them in swimming lessons as I couldn’t face people staring or asking if I was contagious, and sat and watched while my husband took them swimming. Swimming for me was something that only happened on holidays, and then I would get stares.

During my 3rd pregnancy (sadly I had a miscarriage on my 2nd pregnancy), my psoriasis cleared. Unfortunately after a few months it reappeared and gradually got worse. Again, I tried all the lotions and potions. When nothing else worked I was prescribed methotrexate in 2015 but this didn’t work and I suffered side effects including hair loss, headaches and other problems.

Being quite run down, I decided I needed to escape to the sunshine – this had always helped in the past, even if it was short term. We booked a last minute escape to Gran Canaria from the UK. Our daughter became friends with another girl from the UK, and I got chatting to her Mum. She asked me had I ever tried looking at nutrition and exercise?  During 18 long years this had never been suggested to me (We are now best friends).

I changed my diet (which included using some supplements to aid deficiencies I have) and also found what seemed to trigger flare ups (by keeping a food diary) and experienced an improvement in my skin, and also benefitted from losing weight. I was able to start exercising and soon my skin and weight significantly improved.

I began a couch to 5k program with a friend and after 8 months ran my 1st ever half marathon in 2016 and raised money for psoriasis. I also did the Cardiff Half Marathon again in 2017 proudly wearing my psoriasis vest.

My skin is still clear 3 years on and with the same friend (Kathryn) I have developed an award winning fitness group for women and girls and now help lots of people to be physically active. We have a couch to 5k group, 5k +, light exercise class with chair based movements to music, a boot camp session, and children's gymnastics. All because I feel better and because exercise has been very significant for me. 

I actively raise awareness of psoriasis and the other issues that can be caused by it and will continue to support Psoriasis UK . 

Joe's Story

I'm 30 years old, I first got psoriasis when I was 7. I think for me ‘being uncomfortable in your own skin’ moved from being a day to day struggle of itching, burning and unrelenting unease, to a deep embedded feeling that extended to the whole of me. I wasn't good enough and I didn't fit in. Who would love me when I looked like this? I despaired at looking at myself, and loving the whole of myself was a long way away. Shame about my psoriasis took over, I learned what I could and couldn't wear, I had to hide it from the world.

This was a shame that was so much a part of me that I would forget it was there. Then came a turning point in my life and in my journey to accepting myself. At university I was asked - “what's that on your elbows? It looks painful.” In my usual subdued response I would reply shamefully; “it's a skin condition called psoriasis”, conversation would diverge away and all the shame that I'd been hiding was right back on the surface with me.

A very special friend was sat with me during that conversation and later she confronted the issue of what she had seen: "Joe, why are you so ashamed of your psoriasis?" She believed a more appropriate response would be telling it straight just as any other fact that might be discussed, but there was so much emotion attached for me. This was the first time in my life that someone had tried to show me another way to be about my skin condition, but I didn't get it - why would I not be ashamed? Surely anyone would, and that's the response that everyone would expect!? Apparently not.

My bond with this friend became stronger and stronger and soon she became my girlfriend. On another momentous occasion of my life, she kissed me on a patch of my psoriasis and smiled up at me. Even ten years later I am overwhelmed with the love that she showed me in this simple gesture when I recall this moment. We have now been married for six years and had our first child a few months ago. We will bring up our son to love himself for whatever/whoever he is, and we will be mindful of any shame that may be developing.

I don't want to leave my story there because there is a lot that I've missed out and I don't want you to get an unbalanced view of my life. I struggle most days to be happy or content, I've been seeing a psychologist for nearly 3 years about mental health struggles that I have and I still don't quite feel good enough. I don't know where all my issues come from and wouldn't want to unduly apportion it all to psoriasis; but it sure as hell didn't help.

I want the message from my story for anyone struggling with psoriasis to be this: there are people out there who will accept you. Better yet: there are people out there who will love you for who you are. For all of you, psoriasis and all. Please start to accept yourself. Here's one person to get you started - I accept you completely for your psoriasis, whether it is a few patches on your elbows or your whole body is covered. I accept you, I know that you are a strong person and I don't even know you. You may be good and kind, you may be mean and resentful, you may be really quite average. Whatever you are - be it and own it. Don't be something because of a skin condition. Work towards seeing your psoriasis as just something that you happen to have, not something that has to define who you are and how you act.

Believe me when I say, having the courage to stand up in front of the world and say - “here I am, this is me” - is hard, but if you have carried shame around with you for years, there is nothing more liberating.

Let me leave with just one thought - if people judge you (and some will), they are the ignorant and uninformed ones, and they are in the wrong, not you.

Kate's Story

I was around 10 when my psoriasis first came up. My mum took me to the doctor as she thought it could have been ring worm because it came up in a large red circle only on the side of my calf. Since then I have had plaque psoriasis on my arms, legs, shoulders, back, face, ears and scalp. Due to this, I was bullied badly in Middle School for looking different and it has made me very self-conscious of how I look and how other people see me.

I am only now, after 7 years, starting to finally learn to love myself for who I am and embrace the fact that I am different. It has taken me a long time to realise this, despite the constant support of my family and close friends. I do still have moments of insecurity but they go as quickly as they arrive now because of their support.

My psoriasis has had its own ups and downs. In the beginning it started off as plaque psoriasis and then in Upper School guttate psoriasis flared up because of tonsillitis. This covered my back, chest and neck. This again caused bullying until the flare up went.

Recently, I have had another flare up of guttate psoriasis, only this time it hasn’t gone down as quickly so I currently have the two types on my skin, but luckily only in the areas I already have plaques. This has been hard to deal with mainly to do with showing my legs in public as they are the worst affected area in terms of the coverage of psoriasis.

I have always been conscious of my legs because they have always looked worse but this is the worst they have been. I managed to pluck up the courage to wear shorts in public on a shopping trip to Portsmouth but it ended up making me feel very low afterwards because of how many people just stared at my legs and how obvious this made it. Even if I stared back at them they would just look at me and then continue to stare at me like I was an alien.

I had been building my confidence up for a while by posting pictures of my arms and then eventually my legs on my Instagram account to prove to myself that it wasn’t as bad as I thought, and all of that confidence took a massive blow after that trip. However, I got a t-shirt made up with my own slogan on it that gave me a boost as it made me feel like I had a shield against the stares and also the amazing support of my family, friends and boyfriend gave me the confidence to wear a skirt to school with no tights which I have never done since my psoriasis appeared.

I am also hopefully going to finally get on top of my skin by going on medication from the hospital that helps to stop my body attacking itself as much. This comes as a relief after years of trying so many different products. I recently worked out I have used over 30 products to try and treat my skin.

My advice to people who are struggling with anything to do with self-confidence over anything is to embrace who you are, everyone is different and unique and there is no such thing as “normal”. Be who you are and don’t listen to people who don’t accept you for who you are.

  • Georgia
  • Janine
  • Joe
  • Kate

Lee's Story

My name is Lee and I was diagnosed with psoriasis in 1997, and later, in 2012, I was diagnosed with psoriatic arthritis. Now, at age forty, I am just about at peace with it but it took me a long time to get there.

My initial psoriatic arthritis diagnosis was quite a shock. At the time I was experiencing pain in the toes of my left foot and assumed it to be an old kick boxing injury that was flaring up. About 4 years prior to this I had broken my foot in a kick boxing match. It was natural to assume that the injury was just playing up again. However, after six or seven weeks it hadn’t settled down, so I went to see my GP.

The diagnosis was immediate, but the conversation didn’t make sense to me at the time. “You have arthritis” said the doctor, “In your feet” she continued.

I went to the hospital, had some x-rays and spoke to a specialist. The specialist offered me Methotrexate but also described a whole host of terrible sounding side effects. He also said I’d need blood tests every month as well as some other checks to make sure my body was dealing with the medication without issue. He did use the word “Chemotherapy” during the conversation as well.

At the time I was pretty shell–shocked to be honest. I was thinking “Yesterday I was a normal bloke, working hard and getting on with my life. Today I’m being offered chemotherapy and being told that my condition is irreversible.”

I said “No” to the methotrexate. My attitude was that since I had been able to walk to the bus station, take a bus to the hospital, walk from the bus stop to the hospital, and then walk through the maze of hospital corridors; then surely it can’t be so bad as to warrant such medication? The seriousness of a psoriatic arthritis diagnosis was lost on me.

Now, in 2018, I am struggling to walk at all sometimes. I have had months at a time where I have been unable to pick up small objects, or make a fist, or fasten buttons. I have been hit with the most unwelcome bouts of fatigue and tiredness as a result of the illness.

I have never been a quitter. I have never been someone who gives in easily. I still fight psoriatic arthritis every day, without anything stronger than a Nurofen at the moment, but its effects are undeniable.

I used to be a dancer, kick boxer, singer and guitarist in a band. I have done many interesting things. But now I can’t really walk properly, I can’t play guitar and I get so tired sometimes that I have to take a nap during the day to try and recover some energy. The joint pain moves around the body and affects my hands and knees now as well as my feet. Sometimes it vanishes completely.

After a while I realised that the illness had taken quite a lot of who I am away. It had robbed me of a lot of myself and I hadn’t realised it. I became aware that the disease was beginning to isolate me, so, I began to challenge the illness. I began to talk about it more and acknowledge it more. I began to understand how psoriatic arthritis was affecting me and how to work with it rather than letting it defeat me.

I began to make YouTube videos about my experiences (see The Foot Of Our Stairs), and the number of responses was unbelievable. There are so many people with this disease, and there I was assuming I was somehow alone in all this. It has been such a positive thing to share my experiences and talk to other PsA Warriors about theirs.

I know that my PsA will probably progress, and I know that there’s not much I can do in the long run. But I can keep fighting, keep talking, and keep on going. And that’s what I’ll do.

Lyndsey's Story

Psoriasis appeared in my life when I was 19 and I’ve battled with it ever since… At the age of 36 I‘ve still not been able to accept it. The endless appointments visiting doctors, dermatologists and clinics hoping someone can help me look and feel less of a freak!

No matter how hard I try to ‘accept the skin I’m in’, living with psoriasis is unsightly, flaky, scaly, sore, dry and itchy skin. Looking in the mirror I stare long and hard and wonder why this has happened to me.

My nails, which were once long, and my pride to paint in wondrous colours, are now flaky, short yellow coloured, indented remains. Day to day tasks such as handing over money in a shop I feel so self-conscious. My toe nails, crumbly and yellowed, push from the nail bed causing so much discomfort and pain. Psoriasis is so much more than a bit of dry skin…

I long for the patches to disappear for me to look in the mirror and see me again instead of the hideous patches. Psoriasis has taken away the beauty of my skin and my self-confidence.

Every day is a battle having to hide myself away from the world, as I feel judged and ashamed of how psoriasis makes me look. I plan outfits in advance, ensuring my psoriasis is covered.

I love and loathe the warmer months in equal measure. I love the sun shining and the sensation of the sun beating down on my psoriasis patches, I find the sun helps my skin immensely, but with that I have the loathing and dread of uncovering my skin for the world to see. Wearing clothing that exposes my psoriasis makes me feel horrendous.

People often comment when I wear short sleeves and display the large patches of psoriasis that cover the majority of my arms. Comments range from innocent questions from children asking if I have fell over and scraped my arms, to adults enquiring if I am contagious and suggesting I should try a moisturiser.

In 2017 after yet another disappointing trip to the dermatologist, I decided to take part in Clinical Research medical trial for a psoriasis treatment. It felt empowering to know I was involved in something that might help psoriasis sufferers. It was my fight back against psoriasis!

I’ve tried every cream, lotion and potion available, I’ve had numerous rounds of light therapy and now I’m on a systemic medication and hoping this helps… Psoriasis is so much more than just a skin condition.

Lynsey's Story

Hi, I thought I’d tell you about my psoriasis story as I’ve seen so many where it has had a negative impact on people.

I’m Lynsey, I’m 30 and I’m an Audiologist. I’ve had psoriasis for most of my life. My first memory of it was a patch on my right knuckle when I was about 4 and I’ve had it ever since. Psoriasis runs through my family. My mum has had it since she was about the same age and I’ve got cousins with different types of psoriasis, but for me and Mum we have plaque psoriasis.

Like I’ve said, I’ve had it for at least 26 years and it has never affected me, I’ve never been bullied, never had it affect my job. I see myself as a bit of a superhero because I heal so quickly. I understand that psoriasis affects people differently but I don’t let it bother me.

I’ve had small patches here and there growing up and at the moment it’s covering about 70% of my body. I have it in my hair, ears, on my forehead, elbows, arms, boobs, bum, belly, back and legs. At 21 I was diagnosed with psoriatic arthritis too. It doesn’t flare up all too often.

I find that steroid creams help but when I stop using them it just comes back. Moisturisers help but it never goes away. I think I’ve accepted that I will never actually be psoriasis free and I’m ok with it. I’ve just got to learn to cover up and still look stylish. I can’t be bothered wasting my life stressing about something I’ve got zero control over. I would love to help those who are in need of a bit of support too.

Hope I can help someone try to be more positive about their psoriasis.

Maddy's Story

Ever since I can remember I have suffered with psoriasis on my scalp. It used to be easily managed by shampoo and scalp lotion from the doctors.

As I got older my psoriasis got worse, to the point where it was becoming unbearable. I had it all over my scalp so I went to the doctors again and I was told it might not be psoriasis. Well what a setback that was. I thought I’d been wasting my time and energy in using numerous things that, of course, weren’t going to work if I didn’t even have psoriasis.

Following that I was given even more lotions and potions to try treating my ‘dermatitis’. Well, of course, none of these worked, and flared my psoriasis up even more! So another trip to the doctors it was…

This time I was reverted back to scalp lotion and felt pretty fobbed off and fed up. I felt that I had to just get on with it and cope with it as it was. Luckily for me I’m blonde so it wasn’t obvious I had psoriasis except the constant itching, but it was not visible! That was until it began to appear on my hair line and then could be seen. This was when it seemed to affect me most. I constantly worried, ‘what if?’ What if people think they can catch it? What if people think I’m contagious?

After feeling as if it was something I had to get on with, I plucked up the courage to go to the doctors. How wrong was I? I shouldn’t have suffered. I wish I had gone back to the doctors sooner but just thought I would be fobbed off yet again and would be wasting my time and money on prescriptions that weren’t going to work!

I also suffer with psoriasis in my belly button – the most painful thing ever! Again I was told on numerous occasions it was an infection. I was given antibiotics, antibiotic cream, steroid cream and it kept returning! I was told I had to stop using the steroid cream as it can only be used short term so, again, felt like a lost cause. Luckily I was given protopic cream quite soon after my problems becoming unmanageable and that has worked wonders and I use it regularly to keep my psoriasis at bay.

So recently I went back to the doctors, after suffering for months on end and letting it affect my life and self-esteem. Well what a successful appointment that was. I was given life changing treatments that have not only improved my scalp but also changed my life and boosted my self-esteem no end! It was the first time in a while I have been to the doctors and felt that I was listened to and came out with a positive outcome. I was prescribed calcipotriol and cocois.

I am training to be a children’s nurse currently, and I hope one day I can offer support and reassurance to children who feel how I did, like there was no way out and it was just something that we have to get on with, because it really isn’t! And until it’s controlled you don’t realise the impact it had on you!

Maddy

  • Lee
  • Lyndsey
  • Lynsey
  • Maddy

Marcelina's Story

I first learned about psoriasis in 2006. Nobody in my family was ill. I knew nothing about this disease, nothing at all. I was in the course of a diploma practice which I had at ING Bank in Poland. I wrote a diploma thesis, I was finishing a serious relationship, the family situation was difficult - my parents wanted to go abroad. All at once.

The psoriatic lesion first appeared on my head. The first dermatologist I saw told me that it's nothing important and will pass. So I did not worry if it was "nothing important". The problem, however, got bigger.

After leaving the hospital, I could not wash the oil out of my long hair, so I asked my dad to cut it off completely. Razor to zero. Mama did not agree. I did not want to bother with daily lubrication, washing, lubrication, washing... And hair to the waist... I thought it would be funny, and it turned out that people said I had leukemia. I wore a headscarf because there were visible psoriatic lesions. My family were afraid that they would get infected from me. My grandparents did not know what it was at all.

After completing my diploma thesis I went to the same bank for an internship, and with them I associated my hopes for future work. After six months of internship, I signed a contract with ING in another city and moved there. A few days later, my parents went to the Netherlands. It was as if I lost them forever.

I went to a Polish organisation connecting people with psoriasis, thanks to which I started to meet other people sick like me. I went to general meetings of this Association - meetings, conferences - it turned out that I am not alone with this disease. I learned a lot about the disease, I knew all the traditional methods of psoriasis treatment, and I got used to the idea that it was incurable. I opened up, I started talking about it, also at work.

I still remember, a friend with whom we worked in the branch, seeing me drink from her cup - threw it into the trash, saying that she was abhorred. It was the time when we worked together with another person in a three-person team in a new branch. Then I lost my heart to this place. I could not work with people who disgusted me, but I did not have the opportunity to change branch.

I returned to my parents' apartment during this period, so I commuted 40km daily by train. I started to have more and more problems with the disease, fast pace, stress at work, but there was no time to go to the doctor because I worked every day from 7am to 6pm, plus commuting. The bank's branch was located in the City Hall, so there were customers all the time, there was a constant queue, and the germs made me more and more ill. Psoriasis is associated with immunity, so I became ill more often, longer and worse each time. One time I was called to talk to the director. He said that if this is the case, he will not extend my contract. I was devastated.

Not long after, I received a phone call from the branch in which I had a practice and internship. They offered me an alternative passage. For me this was like something sent from heaven because, thanks to this, the road to work would take me 10 minutes’ walk. I started a new chapter and there was time to see a doctor during the week and not to have to look for someone in the evenings privately. Psoriasis, however, did not let go.

Every year I went to the hospital for treatment - two weeks hospital, two weeks post-abortive relief. For this "luxury" I had to wait until the end of September so that everyone at work could use their holidays during the holiday season. As a rule I could not sit down because my legs would stick. I worked in sweaters or suits all year long because my skin was cracking and bleeding, and the requirement of a white blouse didn’t leave me a lot of choice. Long sleeves were standard for me. I could not show customers the cracking and bleeding on my hands. Long pants regardless of the heat. Only I know how much time I put into my hair in the morning to cover all the changes on my head with hairspray. Camouflage to work on direct customer service was, for me, the basic activity that I had to do every day.

I hid psoriasis at work, but not among colleagues. Due to the annual hospital treatment, I told them what I was struggling with. They accepted me. I talked to them a lot about it, they were incredibly understanding. I never heard a bad word, only words of compassion. They were my second family. We kept friendly contacts also outside of work. I also had many friends with whom I worked in two other companies. Every second weekend we spent on training. And also friends from outside of work - friends for either simple or difficult conversations at any time of the day or night. I've never been alone.

I took care of my grandmother who lived with me. I took her on visits to the doctors, after a hip fracture and insertion of a pacemaker. She suffered from RA and diabetes, and I extended my time to the maximum. I lived fast, intensely, a lot. Everything was on time. My illness was secondary.

I did not care about psoriasis all the time. Until I felt good - it was good... I knew a lot about it, I accepted it enough that I talked about it openly when someone asked me what happened to my skin. I was not scared to live, I did not stay at home, I felt that people should learn about this disease. However, many absorbing activities allowed me to make only individual people aware of things that were "on the way".

There were more and more changes at work in the bank. The friendly atmosphere changed into a rat race, and my parents more often told me to move closer to them.

I left the bank hearing that I was making the biggest mistake of my life. I never thought so. Rather I felt that I was free from the gaze of other people, from my personal prison. I could not be myself. My daily work deprived me of a few hours of freedom, because I had to cover my body.

I went to the Netherlands in June 2014. I did not know any foreign language and I had to continue to heal myself. I studied the local health service from scratch, I asked people to go with me to a dermatologist. I started from scratch. Even the medical documentation from Poland did not matter.

I paid for the first six months in the Netherlands with a very bad mood. From the fast, happy, active life I suddenly fell into complete silence. I did not understand anything, did not say anything, I lived like in prison. I worked physically, mostly on night shifts, because my parents worked too, and in the day my daughter could not be alone (she was then 4 years old). I remember this time as sad and at the same time physically tiring.

I started the year 2015 by leaving my job. I could not live that way, and psoriasis was more and more resistant to standard treatment and more and more active. I spent a few months at home, regenerating my strength and skin. The institution that helped me financially offered me a job in a Dutch company, where I could only speak Dutch, so I listened for the first months, still not saying much. In the meantime, I've already learned to speak in English (conversations with people in a previous job helped a lot) so I was independent in dealing with doctors and research. In this work, I started to understand the Dutch language.

2016 brought me the first Dutch contract. I was proud to start work where I was appreciated and where I communicated with people freely. Psoriasis was treated pharmacologically at that time, no external therapies were used. I was also calmer. I had a permanent work contract. Finally, a normal life began, or so I thought...

In September 2016, all this stopped. I have been living with a diagnosis of psoriatic arthritis for 1.5 years. At that time I had thyroid cancer, asthma problems and psychological therapy.

I try to help other people. From the beginning of my journey with the disease I have been running a Polish support group for people with psoriasis and psoriatic arthritis. The group operates under the patronage of the Polish organisation, the Union of Psoriasis and Psoriatic Arthritis Associations, to help create a better way for people tomorrow.

I try to acquire and expand knowledge amongst patients about these diseases in other countries. I'm running a blog about my psoriasis and psoriatic arthritis (in Polish language). I want these diseases not to be taboo, and to show that psoriatic arthritis does not break the principles of freedom of life. 

I never lost hope.

Nakita's Story

Hi, my name is Nakita and this is my psoriasis story.

I’ve always had something wrong with my skin, even from a very young age. I had severe eczema at the age of 3 and I can still remember the pain I was in when it was bad. Everytime someone touched me it felt like my skin was on fire. After a while it settled down and eventually went. 

Later on in life when I started secondary school, I was in PE class when I noticed this dry red ‘spot’ on the back of my leg, so I ignored it and didn’t think anything of it. I then noticed that I had a few dry bumps on my scalp. The following week I noticed another one of these ‘spots’ appear, so I went to my mum about it where she then booked me a doctor's appointment. My doctor took a good look at my skin, diagnosed me with psoriasis, and gave me a steroid cream to try out, but then it rapidly spread from my legs up to the bottom of my back. At this point it wasn’t severe at all, it was only minor.

After a few months of applying the cream, my psoriasis settled down a lot but my scalp was still quite bad, so I went to the doctor's again and got prescribed shampoo and solution to apply to my scalp. Everytime my mum applied the solution I would scream the house down (not literally) - it felt like someone was squeezing lemon juice into an open wound. I can’t even describe the pain I was in. We went through countless bottles of shampoo and solutions but nothing ever cleared my scalp up so I just ‘sucked it up’ and carried on with my life like usual.

As you can imagine, having psoriasis in secondary school totally sucked. By the end of year 9 I was diagnosed with severe anxiety and depression, as well as trying to treat my psoriasis. It was hard but I kicked its butt and I pulled through it! 

And then... in my first year of college the psoriasis came back, and it came back biting! I didn’t want to leave the house, I thought this is the worst I’ve ever had it. I did some research and people have said online that the sun/sunbeds have helped them, so later that year I started having sunbeds and I could not believe the result - after 1 month it had all practically gone! I can wear t-shirts again!!! So I then stopped sunbedding, and kept moisturising my skin so it didn’t go dry again, and it was all good for about 8 months. 

I got admitted to hospital this January with septicemia due to an infection in my kidneys and it almost instantly came back. I thought it couldn’t be as bad as it was when I was in my first year of college, but boy was I wrong. I had never ever seen anything like this before. It was all over my back and there were a few ‘spots’ on my chest but nothing compared to my back.

I went back to the doctors after I recovered from having septicemia, and my doctor told me it has flared up because ‘my body has just gotten over a serious infection and infections can cause psoriasis to flare’. My doctor called it ‘guttate psoriasis’ (I didn’t even know there were different types of psoriasis). At this point she then gave me Eumovate cream to try, alongside more shampoo. I continued to use these as directed by my doctor but, a couple of weeks later, I notice it has started spreading and getting worse on my chest. I also notice that my face is now covered in red patches and dry skin. It hurt to even smile.

Yet again, I went back to my doctor and she gave me this magical cream for my face called Hydrocortisone. It worked wonders for my face, but you’re not allowed to use it for a long period of time so, of course, I eventually ran out of it recently and it has started to come back on my face again. I’m just hoping it doesn’t get as bad as it was again. My doctor also gave me this ‘foam’ called ‘Enstilar’ to try on my skin. It has slightly worked by calming it down but I have recently noticed that new ‘spots’ have appeared on my chest, neck, legs, arms and back. 

When I first had psoriasis I never thought it would be this bad. I have tried so many creams over the past few years that I haven’t mentioned because I can’t remember the names of them, but only a couple have calmed it down. Would I say psoriasis has affected me mentally? Yes, 100%. I used to feel comfortable in my skin and I used to feel pretty when I put make up on, but now, no matter how much make up I put on, I still feel ugly. No matter how much foundation I apply to my skin, you can still see the psoriasis under it. I have massive white scars on my neck and shoulders from previous psoriasis outbursts, that people tend to stare at.

So what I have learnt is, don’t try and hide your skin condition - it is your skin and no one else’s! Sometimes I wish I could talk to someone else who understands me, and understands that going to bed with mittens on isn’t weird because you scratch your psoriasis in your sleep to the point where you have to change your pyjamas because there’s blood all over them. Or someone who understands that you don’t want to leave the house today because it’s really bad and you can’t cover it up with long sleeve tops and a bit of foundation anymore. 

I finally have an appointment to see a skin specialist at the end of this month (April) where hopefully I will be entitled to the UV treatment. I have been waiting for this day for years!! 

Thank you so much for taking your time to ready my story about psoriasis. For all of you beautiful people suffering with the same problem as me, you are not alone in this, we can do this! 

Nakita,

Aged 19. 

Olivia's Story

I have always had psoriasis since I can remember. I remember being in secondary school and having it so bad on my face, but first thinking it was acne and my mam buying all these acne soaps and creams which, looking back now, only made it worse.

I also had it really bad in my scalp. Well I say ‘had’ - I still have it quite severe in my scalp now, but being so young and not having the correct diagnosis was very stressful. My skin on my scalp would get infected very easily and it was awful having to go into school with yellow, flaky skin around my forehead and in my scalp.

I grew out of it being that bad and, from leaving secondary school to being 23 years old, my psoriasis was manageable. I had the right diagnosis and had plaque psoriasis. I always think back to how bad I thought my skin was in that gap from leaving secondary school to turning 23. Little did I know the worst was yet to come.

Just before my 23rd birthday I had what I can only describe as the worst skin flare up I could (and hopefully will) ever have in my life. Literally my skin changed overnight. I woke up with tiny dots over my arms, hands and stomach. I work in a hospital so thought I had caught something from a patient. I went straight to my doctors and they thought I had a hair follicle infection.

3-4 days of taking antibiotics made no difference so I decided to go back to see a different doctor who then told me the devastating news that I had guttate psoriasis which should clear in 4-6 weeks. All I had to do was keep my skin moisturised. I found this information to be an absolute lie!!

As the days, weeks and months continued, I became more covered in these horrendous, ugly-looking dots and they were starting to get bigger as well. The itch was unbearable and I became very low and depressed. I reckon I spent about £300 on things I’d seen people use online who have the same condition and they were completely healed. Nothing helped! Turmeric capsules, probiotics, covering my full body in coconut oil, sea salt baths, going gluten and dairy free. I even ordered a cream from Germany, I think it was, and that didn't help.

Eventually I got referred to dermatology. My appointment came through for June and we were in March! There was no way in hell I could physically or mentally wait ‘til June. Thankfully, with my amazing mam ringing every day to see if there were any cancellations, I got an appointment in April.

I was that low that even going to this appointment and being told I was going to start UVB light treatment at the time made me feel no better. I just thought ‘I had tried everything, why was this going to be any different?’ However, 4-5 treatments down the line I started to notice a difference. I could not believe my skin was changing before my eyes. These little dots were still on my body but they were no longer as thick to feel and the redness was going.

I am now on my 13th UVB light treatment and I'm a completely different person to that lost woman I was in March of this year. I hope this message lets people who are in the midst of suffering with psoriasis at the minute, or in the middle of a bad flare up, know that it will pass - I promise! And try not to push anyone away who just wants to try and make it better for you. Let your family love you because we all deserve it!!

Rachel's Story

Hello, I’m Rach. I’m 33 and have had psoriasis since I was 16. I was initially diagnosed with moderate to severe psoriasis after going to the GP with what I thought was scarlet fever. It went on to become pretty darn severe; literally all my fingernails fell off and my hair came out by the bagful. The spots also started joining up into huge plaques that split my skin from edge to edge and my ears bled. Awesome. The effect that had on my burgeoning young-adult self was fairly catastrophic. I became self-destructive, withdrawn and miserable.

I went on to have a first round of phototherapy (as well as steroid creams etc) - it was very successful and I enjoyed a longish remission. But after around 12 months the pattern repeated itself. A moderate flare, followed up by a head to toe misery-fest; this time even the insides of my eyelids were affected. Given that I had enjoyed success with UVB I rather drastically thought that moving back to Australia (my childhood home) would be a cunning psoriasis miracle fix - it kind of didn’t work out the way I had pictured in my head - I did not become a radiant, psoriasis-free mega-babe! No. In reality I was still a very, very sore and self-conscious young woman, kidding myself that by leaving the colder climate behind and immersing myself in light I’d escape my condition, my split-open skin, my daily blood soaked sheets and my absolute self-loathing. On reflection, I really just wanted to escape being myself. Essentially all I’d achieved was further withdrawing myself.

On a trip back to the U.K. around 13 years ago I met a tall, dark and handsome RAF Engineer and that, of course, was that! What luck, thought I! A gorgeous fella loves me for me. I’m in! Cue marriage, house moves, deployments aaaand MASSIVE PSORIASIS FLARES! After 4 more 8 week rounds of UVB treatment, more “oh, are you sunburnt?” comments and endless steroid ointments, creams and scalp applications and 3 hour shower marathons, I said “Rach, get a grip - put on your brave girl pants and look at the next steps!” Which of course meant systemic drugs. I had my chest X-ray, liver tests, blood tests and pee tests, all set and good to go, but then, pregnant! I’ll tell you something - that little belly lodger waved his magic wand and *poof* goodbye psoriasis! For almost 2 years! Then I finished breastfeeding - and guess what?!... More UVB, more “have you burnt yourself?” more creams, then HOORAH! Pregnant again - a happy 2 years remission, aaand the up and down like a fiddlers’ elbow saga continued - enter the motherload of a flare up. This time bringing with it the onset of psoriatic arthritis: joint pain in hands, feet, knees, elbows and hips. Super.

With a husband deployed in Afghanistan, a house move, two little ones to bring up on my own while trying to hold down a job, I made an educated guess that *perhaps* stress might be playing a part?! Duh! And, sensibly recognising that I MUST NOT USE PREGNANCY TO FIX MY SKIN, I cut my hours, I went on a strict diet and, it sort of worked. A bit. Until it didn’t anymore. What now?!

So, around 4 years ago I started on Cyclosporin - amazing results. Relatively few side effects and my skin, for the first time in my life, was beauty magazine clear and I was so happy. Curveball alert! I then got a big scary brain infection, had to come off the medication and so began a slow recovery back to health.

Because I had already taken Cyclosporin for 2 years, that was now off the table and Methotrexate was introduced - I am still on it to date. My journey with methotrexate has been a rocky one - plenty of side effects, most notably extreme fatigue, nose ulcers (delish!) and some hair loss. I also still flare - albeit very mildly. But, and it’s an important but, no joint pain, Yo! And I am as stable as I have ever been - no searing success highs to heart-breaking, soul destroying lows.

There's now a balance I’ve not had before and to look at me now you would not know that I have psoriasis or arthritis. I would like to envisage a future free from medication and of more acceptance of my condition, but that in honesty still feels a long way from now and I accept that. I recognise how much my condition mentally affects me and so for now I am happy to have found a way through it, to not be desperately searching for the next thing, to finally feel beautiful, and moreover to have found the wider online psoriasis community for their openness, frankness, good humour and good grace. Knowing, seeing and sharing that you’re not alone is more uplifting and empowering than I can begin to describe. 

  • Marcelina
  • Nakita
  • Olivia
  • Rachel

Rhianna's Story

Hello, my name is Rhianna and I’m 17 years old. I began my psoriasis journey when I was just 11 years old. I remember waking to red, angry patches covering my body, that felt like a paper cut. I was confused and that’s the least I can say.

Weeks before I discovered I had psoriasis, I had moved to a completely different town, hours away from home, leaving behind family, friends and memories. It was a positive new start for me, well that’s what I thought. I hated it! I used to reassure myself that it will get better soon. I became emotionally drained.

I had no idea that psoriasis even existed until my dad reassured me that he also suffers. My confidence was non-existent. I remembered myself being this positive, smiling young girl who had no worries. I stopped doing the things I once loved like socialising and even going to school. I became just blank like a canvas. I lost myself.

I had to undergo PUVA treatment which gave me hope in finding myself again. The treatment left me drained and unmotivated. I had my first experience of sleep paralysis due to how drained I was with the early morning travels to a different town. My face was covered in painful burns. I just felt helpless and sorry for myself.

It was suggested that I talk to someone professionally to just talk. My confidence slowly came back as I began to write my feelings in a book. My psoriasis became unnoticeable from the strong treatment and I just reconnected in general.

Most people with psoriasis will know the struggle of feeling not good enough in your own skin. It’s the learning how to deal with that thought. Accepting your flaws and just being confident. Show strength to those who doubted you and forgive yourself. Forgive yourself for the pain you’ve put yourself through. 

Robyn's Story

So I must have been about 6 or 7 when my mum noticed some strange marks on my knees. I'd fallen over a little while before and, during the healing process, something kick started my immune system and my psoriasis came out to play.

Skin conditions were not uncommon within our family. My maternal Nan had suffered with psoriasis and eczema, the latter of which was passed to my sister, who would find childhood trips to the seaside particularly painful as the salt water crept over her sore skin.

One of my earliest memories is going to the hospital after school, sometimes daily, to receive various different topical treatments. After being creamed and left to 'set' I'd get to bath it all off, and my mum would wash my hair in hospital-issue pink shampoo that smelt like sweet almond. I loved it.

Since then, and as I've grown up, my treatments have evolved. Anything from UV to Methotrexate to Biologics, all with varying degrees of success. Typically I start off well with medication but then it's as if someone flips a switch and my body says 'thanks but no thanks'.

One of the hardest times was 'the methotrexate years'. I should caveat this by saying that this is just based on my personal experience - everyone reacts differently - but I really struggled with the side effects. I started taking the tablets on a Thursday evening, which meant most of Friday would be spent feeling like I had the worst hangover, sick to my stomach. Some days I couldn't face the smell of certain foods, others I would be craving greasy carbohydrates and sugar, sugar sugar.

Eventually I moved on to the injections, and for a time this seemed to be a good alternative until a series of quite serious upset stomachs meant I couldn't continue. After that came Otezla and Cosentyx, the latter of which suited me best. Like the Goldie Locks of the psoriasis world, I had stumbled across something that seemed just right! But, for one reason and another, I couldn't continue. Right now, I'm letting everything leave my system and although my patches are creeping back I feel healthier than I have in a while.

I've always been pretty positive about my skin. It is part of me but it does not define me. Sometimes during a flare up it's tempting to cover up, but what would that achieve? Confidence is key, and if I'm not bothered by what's on the outside, why should anybody else be?

Russ' Story

Russ has chosen to share his experiences of psoriatic arthritis by writing a poem. Have a read below, or listen to Russ read his poem aloud instead.

Psoriatic arthritis
What the hell is that?
Are you growing an extra head?
Will you need two hats?

The total lack of knowledge
Totally flummoxed me.
I was having an assessment
At the D.W.P.

I accept that my condition
Is not exactly common.
Even my family’s understanding
Borders on the rotten.

People only see my skin,
They cannot see inside.
I’m too young for arthritis,
People often chide.

They don’t see me in the morning,
Crawling out of my pit.
I’m like Bambi full of whiskey,
Going for a p*ss.

I get some tablets down me,
Cover myself with grease.
A fag and a strong coffee
Brings me inner peace.

I’m ready for the day now,
See what fun it brings.
Already I am giggling,
I can’t open the bin.

Fat fingers are a nuisance,
They’re swollen and they’re sore.
I start to butter a piece of toast
And drop it on the floor.

I must use half a loaf each day,
There is toast everywhere.
But that’s one of the problems
Of having paws like Yogi Bear.

It looks like I’m staying in today,
Using keys is such a chore.
I have been trying for 10 minutes
But can’t unlock the door.

PsA is weird,
Some days it ain’t there.
I feel I could go dancing
Just like Fred Astaire.

Then other days it hits you
With a full frontal assault.
I struggle to even walk
Never mind run like Usain Bolt.

That’s what really baffles me,
How will I be tomorrow?
Will I be dancing in the street?
Or drowning in my sorrow?

The latest drug really helps,
It’s fresh off the shelf.
For the first time in 20 years
I feel like myself.

  • Rhianna
  • Robyn
  • Russ

Share Your Story With Us


Are you inspired by other people's stories and interested in sharing your own experiences of psoriasis and/or psoriatic arthritis? Would you like your story to be featured on this page, and on our social media channels?

We are looking for...

  • Your story of life with psoriasis or psoriatic arthritis (or both) in your own words
  • Ideally 400 words or less (if you want to write more, that's fine too)
  • A photo of yourself to accompany your story (you can provide as many photos as you like)

  • If you're interested in taking part and sharing your story, or you'd like more information about the project, please contact us at
    mail@psoriasis-association.org.uk  

The Psoriasis Association is the UK's leading national charity and membership organisation for people affected by psoriasis – patients, families, carers and health professionals Read More >

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Email: mail@psoriasis-association.org.uk

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01604 251 620
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01604 251 621
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