Isabel Castillo Guijarro

I suffer with severe psoriasis and want you to know the issues aren't just skin-deep

I use to wish every day at 11:11 am that I’d wake up the next day without psoriasis.

26 May 2019

Psoriasis is starting to get more of a name for itself, thanks to the likes of Kim Kardashian and Cara Delevingne opening up about their struggles with the condition in recent years, but back when I was a fresh-faced 18-year-old, the word was one only really known by medical professionals.

For me, it all started when my dad was in hospital fighting cancer; my eyes started to get crusty and behind my ears were red raw patches. It took almost a year to get a psoriasis diagnosis, being passed from doctor-to-doctor and even finding myself sent to A&E on one occasion, where my eyelids were bleeding so heavily that I couldn't open them. My dad recovered, I continued my day-to-day university life and finally went to a dermatologist who recognised it as psoriasis. Unfortunately, that wasn't where my experience ends, and it didn’t end up being a one-off flair up that could be put down to stress.

With a lot of skin conditions, the diagnosis is the hard part and once it's identified, there will be a cure or treatment to help you get better. But, psoriasis isn't like this - it's an autoimmune condition, meaning it's an internal problem that presents itself on your skin. Psoriatic diseases are caused by an overactive immune system, and autoimmunity occurs when the immune system automatically launches an inflammatory response against your own body. Basically, your body thinks it's helping you but it's actually making you sicker. This is the greatest misconception with psoriasis, the idea that it's similar to other skin conditions or is just a bit of 'dry skin'.

In actual fact, the issues go much deeper and aren't just skin-deep. People can suffer from either or multiple of the following types of psoriasis: plaque (large lesions covered by silvery scales), guttate (smaller spots covered by a fine scale), inverse (covering joints in smooth patches of red skin), nail (found under the nail which can cause the nails to loosen from the nail bed), pustular (pus-filled blisters), erythrodermic (can cover your entire body in a peeling rash) or psoriatic arthritis (causes painful swollen joints). On top of those all intensely painful and debilitating forms of psoriasis, you're then also susceptible to a plethora of other conditions (both physical and mental). Oh, and then the drug treatments you might be given also have a list as long as your arm of side effects. All a bit doom and gloom, tbh.

For me, I've had a rougher time than most with it, with one consultant audibly gasping at an appointment because I was so covered. I've had plaque, guttate, inverse, and erythrodermic psoriasis, with varying coverage of 20% of my body on a good day to 90% on a bad, from the soles of my feet to my scalp. It's hard to put into words what it feels like when 90% of your body is covered in red, bleeding, itchy lesions that have a pain I can only compare to rolling around in thousands of stinging nettles every-moment-of-every-day and deep arthritic bone pain that aches and grinds alongside the stinging. This isn't meant to sound woe-is-me, but it is important that I don't downplay what it's like - because that's what's contributed to people not taking it seriously enough, doctors included. I spent years downplaying and hiding it, brushing it off with friends and family, never showing people how bad it actually was.

But, in the last year, I've come to terms with my psoriasis. Largely, because I didn't feel like there was another option anymore. I'd been on methotrexate, a drug treatment used for people with leukemia amongst other illnesses, that was violent and sapped me of energy 24/7. I spent two years running to throw up in the toilets at work and constantly worrying that I'd get one of the awful side effects of methotrexate, like liver failure. I then tried another drug, ciclosporin, that did next-to-nothing but could have caused me kidney failure. Until, finally, the NHS approved me for a grant to go on a biological treatment (a much less dangerous option). This grant only got approved a month ago, and after years of feeling in complete despair, there's finally a light at the end of the tunnel.

During all this back and forth with treatments, I began to look after my mental health more and feel calmer with the fact that I had a chronic illness that I'd, likely, always be grappling with. I began to wear dresses without tights, go outside without makeup on, go swimming on holiday, date people without feeling embarrassed. I began to talk about it more, on social media and to the people around me. I began to stop googling miracle cures and accepting this condition for what it is - a chronic, autoimmune disease that no one has fully understood, yet, and that may never be explained to me why I have it.

I've received 100s of DMs on Instagram from people with psoriasis asking me for advice, telling me how inspired they are that I'm showing off my skin, and wanting to know how they can love themselves when it feels like their body is at war with itself. I wish I had a secret cure or potion for self-love, but what I can offer is this - do the work. Do the work to understand your condition, do the work to call out your doctor if they aren't listening, do the work to educate those around you, do the work to look after your mental health with therapy or medication, do the work to cut yourself some slack.

I use to wish every day at 11:11 am that I’d wake up the next day without psoriasis, but I’ve stopped doing that lately. I wouldn’t wish this condition on anyone, but I know that it’s made me more resilient than I ever thought possible and has given me a new appreciation for life.