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Elizabeth speaks candidly about her experiences of psoriasis, from avoiding swimming lessons in primary school to fears that her daughter may inherit the condition.
My first memory of psoriasis is when I was in primary school, possibly around 8 years old. I think this was my first ‘win’ in avoiding the shame that was to follow me for the rest of my life; I got out of swimming lessons - yay. The relief of not having to be so vulnerable in front of my young peers, and not having to lug that big, white tub of greasy emollient around, was great!
I couldn’t, however, avoid every situation, and there were different moments during my life that stay with me to this day. Some examples, when we had PE and my legs were on show and my classmates made comments about my skin. When I was in my teens and went into a changing room in a clothes shop and to my horror saw it was communal!! Yep, no individual cubicles to hide myself in (needless to say I ‘didn’t like that outfit anymore’). During my adult years when I was in a meeting at work and as I stood up I saw my little snow storm left on the desk and chair – how the hell do I wipe this down quickly, but subtly?? I put my notepad on the table and sat back down, pretending I was going to stay and finish something off. Thank god the carpet was light grey.
I remember multiple GP and hospital appointments, many with my mum who was anxious to find something that would help me, where I would have to show the Drs and nurses my body for them to inspect it (often accompanied by pitying looks).
In my (I think) late teens/early 20s, I embarked on the highlight of my embarrassing psoriatic journey. I started a treatment, I forget the name now, where I stood naked (apart from my knickers – I got to keep an ounce of dignity at least), overweight and covered in psoriasis, in front of three nurses, feeling extremely self-conscious while they painstakingly dotted this tar type of ointment on every one of my patches. I swear time used to stop, just so I could slowly shrivel inside at the discomfort I felt when what I always tried so, so hard to cover, couldn’t have been more apparent. When they had finished I got to stand there, star fished for about 20 mins. This went on for a number of weeks – and never got any easier - and if I remember right, it didn’t really do that much for my skin, other than flatten it out a bit, maybe take away some redness. But it wasn’t alone in its lack of success. Nothing lasted long. If I got some relief, it was always short-lived, maybe a few weeks if I was lucky.
I tried treatment after treatment, steroid creams, stinky tar, light therapy, then the bad boy of light therapy (PUVA) – this was the one where I had to wear sunglasses on the treatment days. Well, imagine you are a walking ball of self-consciousness in your early 20s, in Newcastle upon Tyne; it’s not exactly the Costa del Sol. People used to look at me as if to say ‘who do you think you are, wearing sunglasses when there is not a ray in sight’. Head down, scurry on to the hospital. At least I wasn’t naked though!
Clothes were my saviour; covering me up, but I have never liked clothes shopping. I found it one of the most depressing and demoralising necessities. In the days before internet shopping anyway.
I always had to consider what I wore – can you see my red patches through this top/these tights, I can’t wear that colour dress as thick black tights don’t go with it. I can’t wear that black top as the scales that drop from my head will be really obvious. I remember a nightclub me and my friends used to go to in our late teens. It was great, everyone went there from our all-girls’ school, and the neighbouring all-boys’ school. But there was an area encompassed by one of my lifelong nemeses – the dreaded UV lights! Not that I needed it as I was always aware of it, but my friends were always on shoulder watch, subtly dusting my shoulders or alerting me to the hundreds of flakes of skin that plagued me, throwing me into a panic to get out from under these f**king lights. They destroyed the hard work I put into hiding my psoriasis every time I left the house, in order to look normal. God I hate the scalp flakes.
My dad used to say ‘I wish I could take it from you’. ‘Really dad, do you?’ I’d hit back. ‘That’s easy to say when it’s not possible’. It used to make me so angry when he said it, although I knew he wholeheartedly meant it, and really would swap places with me in an instant. There are other phrases I used to hear a lot – and hate:
‘There’s other people who have it worse than you’. Eurgh, that doesn’t make me feel better, only guilty, and sorry that there are other people out there who feel how I feel.
‘You’re just you to us, we barely even notice it’. My dear friends and family; you see what I want you to see. And I might be ‘just me’ to you, but I’m not me, to me. I’m that walking ball of paranoia and self-loathing; I know I look like a leper, I have eyes. I look like I have been in a fire when it’s at its worst. And I’m not just being paranoid here, a number of people have said that to me, my husband was there once to back this up.
Ah my husband. He’s great about it. The biggest things that bother him about it are: a) the way it makes me feel and the things it restricts me from doing, and b) the mess I make when I sprinkle skin everywhere I go. That actually makes it sound a little nicer than it is – a sprinkling, like of glitter – ahh nice. Nope, not nice. I sit and I pick at my patches ‘til they bleed, scratching away to get some relief, leaving gross little piles of skin in our communal living spaces. This is what he doesn’t like. I have had a lifetime of picking and shedding; sometimes it doesn’t even register that I’m doing it. Sometimes I even enjoy the picking.
He's been with me through various treatments and varying levels of severity and has never once – apart from scorning me for not vacuuming up after myself – made me feel bad for having it. I wish I could say the same thing about myself; I must have done something bad to be afflicted with this little-understood condition.
As I have grown up I have learnt to deal with my psoriasis in a different way. I’ve become that little bit more comfortable in myself and I auto-adapt to situations where my skin requires consideration. However as I have got older, my concerns over my psoriasis have also changed. (I would like to point out that I am aware I must sound very self-indulgent here, but that’s what this ‘story’ is all about – me and my psoriasis, so please bear with me).
I was firstly blessed with two beautiful nieces, then my own beautiful little girl, so instead of just thinking about psoriasis and me, my anxiety scope widened to them too. I am terrified my child will get it.
I don’t know if I’d have the strength or the patience to go through what my mum did with me; the years of creams, appointments, the disappointment when a new treatment doesn’t work, or stops working, seeing your child in pain, both physically and mentally. But I wasn’t about to let psoriasis take away something I yearned for – a child. So if it happens, it happens, and we will deal with it, plus treatments are getting better all the time…
Three years ago, after three decades of my skin condition and numerous oral drug treatments, I was referred to a different Professor, a specialist in biological treatments. Well, what a revelation! There were these injections that I could take that wouldn’t impact my quality of life (can you believe one of the oral drugs requires you to cut out alcohol! Pah, I think not, I didn’t last long on that one, and not just because of its awful side effects!). Anyway, this wonderful man was sat there telling me that they would get me pretty much clear – CLEAR – in time for my wedding which at the time was about seven months away. Oh I so desperately longed for that – to on that one day, not feel disgusting and be able to wear a nice dress without sleeves. As I day-dreamed about that concept; another thought entered my head… I could go swimming!!!!!! SWIMMING! I imagined playing around in the swimming pool with my daughter and my (now) husband. I cried.
It all sounded too good to be true; I was wary, and for good reason. The first type of injection didn’t work. The second one helped, but Professor Wonderful (aka Griffiths) said we could do better. We were getting nearer and nearer to the wedding, so they rushed me on to the third and apart from my legs, I was clear for my wedding day. Yippee! This one went from strength to strength, with no side-effects; I had found my little miracle ‘cure’. I was about 98% clear. For the first time in my life, I had normal skin. It. Was. Amazing. I went swimming with my daughter, we even went on a little family holiday abroad and I had my legs out!!!!!!!! I wore dresses, shorts and NO BLACK TIGHTS OR LEGGINGS IN SIGHT. I felt so happy.
I think that level of contentment then led me into a false sense of security as I decided I wanted another baby. My husband had his reservations as among other things it meant coming off my psoriasis medication, but I was sure… I was prepared. It took us about a year and a half to get pregnant the first time so I was anxious I’d have another long wait ahead of us, but five months after my last injection was out my system; I was pregnant. In that time my psoriasis had returned, as anticipated, but much slower than expected; cool, I could totally cope with this! I was pregnant, not too scaly and everything seemed to be going my way.
Unfortunately it wasn’t meant to be and I miscarried. This knocked me a bit and I felt all my hope slipping away with each day, and each new patch of psoriasis that came to both keep me company, and taunt me. It’s kind of like a friend you hadn’t invited, and didn’t want to have to entertain. It’s like this thing that you hate, but gives you comfort. You can always rely on it (coming back). This thing that is with you on your darkest days, but is also the reason for those dark days. Odd.
Well it’s coming back with a vengeance now, I guess because of all these feelings – they say a trauma can make it worse/set it off and like clockwork it erupted like a dormant volcano that certainly wasn’t dormant any longer. Now don’t get me wrong, it is what I expected, but it still doesn’t make it any easier. I feel angry, not just because I lost my baby (while it was early days – it was going to be my baby, my last pregnancy), but also because I also have to grieve my clear skin… without having anything to make it worth the renewed pain.
Now, I wish the only decision that tore me up was about what clothes I could get away with wearing, whilst still looking my age. Instead I have really adulty choices that are dictated by my psoriasis; like choosing to have another baby (which I really ache for) and let my skin and mental health get progressively worse, or do I give up on that dream and seek sanctuary back in my injections. I’m still deciding.
Either way those wonderful people at the hospital will help, and support me getting back to my happy place, of clear, smooth skin and clothes that don’t leave me red raw. To being a better wife, mother, daughter, sister and friend. To… freedom. I know I will have it again.