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Following a stressful period in his life Jack developed psoriasis, and later, psoriatic arthritis. In his story Jack shares the challenges of living with both conditions and how a combination of lifestyle changes and treatment help him to manage.
My name is Jack and I have psoriatic arthritis. I first developed psoriasis about five years ago and have had psoriatic arthritis for roughly the last two. I first started to get psoriasis when I had my own business, a start-up to help the creative sector raise money for projects. Having a start-up is really hard, it’s very long hours, very small pay and a lot of pressure.
In order not to take money out of the business I did chef work in the mornings and then I would run my business, followed by working at events in the evening. I was working 14 hour days at my job and unfortunately the business had a lot of problems and after three years we had to close it down.
Winding down a business comes with a lot of stress and in the week our business was closing down my girlfriend of 5 years left me. She told me she wanted more in a relationship and moved out within a week. As you can imagine that was one of the hardest weeks of my life and I developed psoriasis probably from the stress. But if I’m honest I had been working like that for a number of years and having previously worked in sales I was always in a high pace/high stress environment, there was also commuting and I liked to party quite hard to relieve the pressure. I wasn’t really looking after myself and I just thought that’s how life is.
When I first got psoriasis it developed on my head, I’d previously had dandruff so just thought it was that. I then started to develop dryness around my nose, next to my eye and behind my ears. I thought nothing of it and it was just dry skin. Being a bloke I didn’t take it seriously and just thought maybe it’s from being in a kitchen. By then I had become the manager for the café at my work and was doing the catering for events in the building.
It wasn’t until I left that job and had started a new business that one day I came into work and my colleague thought I had been in a fight because my head was bleeding and a bit swollen. My friend made me go to the doctors. At first, I was diagnosed with eczema. They gave me some eczema cream and told me to come back in a few weeks. This actually made it a lot worse and accelerated the condition. Over the next three months it spread to all over my body, it was on my chest, legs, arms, face, head and I also had it on my bum and in my pubic area. I know that’s really embarrassing but I’m sure there are lots of men who are going through the same but too embarrassed to say that.
Every time I went back to the GP they would just give me different products, after 3 months I got to see the special dermatologist at my GP practice. When he looked at me he said you haven’t got eczema but psoriasis. Eczema tends to be inside of the joints whereas psoriasis is on the outside. Over the next year, things were still getting worse, my hair started falling out and my fingernails started to go weird, they were pitting and getting grooves before starting to fall off, this was happening to my toenails too. That 2-year period was horrible and it took away a lot of my confidence, I looked so scabby and flaky and was bleeding all the time. It took me about 3 years before I felt comfortable being naked in front of someone. If someone sees genital psoriasis they can jump to all sorts of conclusions. Also a lot of my hair had fallen out, my mum would cry if she saw me because I looked so mange, (she told me this after my psoriasis was under control).
The thing is when you have psoriasis it can lead to other problems. For example one shampoo burnt my head, and an ointment I would wear in my hair overnight with a shower cap would warm up, run into my ears and then make them blocked and I’d go deaf.
After two years of this hell and it just getting worse once my fingernail pitted my doctor told me my condition was changing and thought I might have psoriatic arthritis. I thought to myself great, I look scabby and now I’m getting arthritis. This turned out to be a blessing and a curse. It was a blessing because it meant I could get on to Methotrexate and eventually biologics too. But my god having psoriatic arthritis is a real battle.
The reason why I keep talking about the emotional side is that unless you have it you can’t understand how self-conscious it makes you feel, and the worst thing is if you start worrying about it, it makes you more stressed and makes you worse.
Now that I have had psoriatic arthritis for 4 years I’ve learnt to appreciate it. I appreciate it because it has made me slow the pace of my life down, I no longer put myself in high pressure jobs and really try to live a stress free life. Meditation has been a big help to me and I found Reiki helped my hair to grow back. Over that time I had experimented with my diet and I was vegan for a month but when I saw my doctor he told me to stop as I lost too much weight and there was no benefit to my condition. I think holistic therapy is really important as our bodies are attacking themselves. You should really see it as an auto-immune disease rather than just a skin problem. Anything you can do to help calm your systematic nervous system helps. But for me I still need my drugs, I have a weekly methotrexate injection, this is the same as taking 10 tablets a week. I also have a Humira injection every two weeks and I’m also on 4 Sulfasalazine tablets a day and 2 folic acid once a week. A couple of other items I have incorporated into my routine is not to use any soap or shampoo when showering, I just use Epaderm Ointment (this is the only thing I’ll use to clean or use if I have dry patches). CBD cream has completely changed my pain relief routine and green-lipped mussel gel has been fantastic to warm up my joints on a cold day, and I couldn’t work without my compression bandages too.
The things I don’t think I’ll ever get used to are the tiredness, the randomness of a flare up, and not being able to concentrate, I also have long term worries about taking medicine and I think psychologically that can be really hard because there isn’t a cure. I also think as psoriatic arthritis is a hidden disease people can look at you and think you’re fine but you’re not and they don’t understand especially in winter how hard life is, and the fact that your focus is always on managing yourself, rather than being super ambitious or really putting pressure on yourself. I no longer want my own business and definitely don’t want to be sales director again, I have now trained to be a Reiki therapist and doing this work gives me such a sense of pride and to be given the chance to help people I find very rewarding. Sometimes I believe I needed this condition to force me out of the life I was living and that’s where I find some appreciation for my condition.
It’s a harder life but it’s a simpler life and that can bring you peace, although the contradiction is my condition is fine right now but tomorrow I could be in a whole world of pain, and this would be written very differently.