I spent 60 years hiding my skin because of my crippling psoriasis - The i newspaper
By the time Jean Knights was in her thirties, she had lived in 18 different countries. The one constant in her life, other than her husband Colin, was psoriasis. Jean, now 67, recalls the first memory of the condition that would be part of her life for six decades. "I recently reread letters that I sent home from boarding school and I wrote about having an itchy scalp and having to go to the doctor," she tells me. "I have had it ever since in varying forms."
More than skin deep
Psoriasis is a skin condition that causes red, flaky, crusty patches of skin covered with silvery scales. These patches normally appear on the elbows, knees, scalp and lower back, but can appear anywhere on the body. The patches can be itchy or sore, and it's more than skin deep, too - it is also a chronic autoimmune condition. Almost two million people in the UK suffer from psoriasis.
Treatments vary – and having been based in so many different places around the world, Jean has tried more that most sufferers. “I’ve been on all sorts of different gunges and potions, unguents, vitamin A analogues, vitamin D analogues. I’ve done juicing, I’ve been on different diets, I’ve had allergy testing. It’s like a full-time job.”
A variety of treatments
Dr Anjali Mahto, a consultant dermatologist and a spokesperson for the British Skin Foundation, explains that while there are a number of ways to treat the condition - "depending on the extent and severity, psoriasis can be managed with topical creams and ointments, light therapy with UVA or UVB, systemic medicines and injections known as biologics which modulate the immune system" - but that there's no one "gold standard" for treating it.
Instead, "treatment choices are based on the individual and how they respond to treatment taking into account the rest of their medical history. A dermatologist on the General Medical Council specialist register will be able to guide you on the best treatments for your skin."
Unsurprisingly, Jean has seen her fair share of experts over the years. "When I lived in Singapore I had a dermatologist who gave me injections directly into my scalp. He created this concoction with a multitude of ingredients that was yellow and smelly, but it actually worked to move the psoriasis off my scalp, and also off my elbows and knees. I used it for quite a long time, but then it stopped working."
People thought it was contagious
And as well as the physical effects of the condition, Jean struggled with how it made her feel "psychologically, emotionally, biologically, stressfully … it all has an effect", she explains. "One of the greatest effects for me was that it has a sense of otherness, of alienation, especially as a young person. People thought it was contagious. The fact that it's an autoimmune illness is not something that people really take into account."
Jean, who now lives in Guildford, was hospitalised as a teenager due to the severity of her psoriasis. "I had plaque psoriasis on my arms, torso, legs and scalp. They wrapped me, mummified me, in bandages, and applied coal-tar solution. It smelt terrible. Then my boyfriend came to visit me - and I sent him away. The nurses were horrified - 'Oh! He won't mind!' they all said, but for an 18-year-old to be seen in that state was something that I didn't want to happen."
Sufferers seeking a solution
It's little wonder that sufferers are constantly on the lookout for new ways to soothe their skin. Last week, a Facebook post written by a woman who claimed her psoriasis had been "cured" 24 hours after using a baby moisturiser - Child's Farm - costing £3.99 went viral, garnering 40,000 shares and 12,000 reactions on the social network.
"Needed to share this with you all," Laura Gray wrote. "I suffer from psoriasis, have done for years, I get it all up my arms, neck and chest and up until yesterday only hydrocortisone cream would get rid of it, but it's really harsh and only pharmacists can give you it. Yesterday my Mam told me try this baby moisturiser, I'm not joking 24 hours later my psoriasis is gone! Anyone suffering with psoriasis or eczema you need to try this!"
However, Dr Mahto recommends always seeking help from a dermatologist, as well as being cautious about new treatments. "'Alternative' or 'natural' therapies should be treated with caution in the management of inflammatory skin disease. It is best to stick to tried, tested and validated treatments rooted in medical science."
A new hope
For Jean, a product suggested by her sister has had a positive impact on her psoriasis. "My older sister is always on the lookout for anything about psoriasis and she sent me an article about Soratinex last year. I am so cynical, I think that most of the things I've tried over the years have been snake oil. But I said to myself, 'Jean, don't be so sceptical, give this one a go'."
A three-step process that consist of a gel to removes dry flakes, which contains salicylic acid, a cream to soothe inflammation and a body oil to form a protective layer, Soratinex is applied for eight weeks, twice a day and is steroid-free. "It's expensive," says Jean, "so it would be wonderful for people to able to access this through the National Health Service." A small pack costs £68.59, which should last about a month, and a large one at £121.05 that should last about two months.
"My legs were 97 per cent clear of plaques after five weeks. My arms 95 per cent clear - there's just a tiny little bit on my right elbow. I had psoriasis on my face in the past five years, which was very distressing, but that's going. My scalp is clear completely. All in all, I am thrilled. It moves me to tears," she says.
There's a lot of shame
"The few friends I've shown who've known me for a long time and who have seen my legs in the past have said they've never seen them look like this. And I have nice legs! I'd like to get them out more. With psoriasis, you learn to cover up, there's a lot of shame that you have to work through. I love clothes, they're something that I really enjoy, but all of my clothes are there to disguise."
Jean has also learnt to manage her psoriasis in other ways. "If I feel really really sad, my skin can become more inflamed, so I use exercise, I use walking, I use nature as a way of alleviating all of that which really works for me. Mindfulness and meditating also work for me." Dr Mahto concurs. "Stress can also anecdotally trigger psoriasis for many sufferers and finding ways to manage this such as yoga, meditation and mindfulness can help."
My psoriasis has been a teacher
And despite having battled with it for so long, Jean credits her skin with inspiring her career as a psychotherapist. "I feel blessed by the fact that my psoriasis steered me into my profession, and has actually kept me searching and researching. I wouldn't have this profession to the extent that I have it if it wasn't for my psoriasis." Indeed, she sees it as "a tutor, as a teacher".
While Jean doesn't discuss her experiences of psoriasis with her clients, she often uses it when working with other therapists. "I bring it up when, for example, we're working with the topic of shame. Because my experience of psoriasis is one in which shame can flourish.
"I wasn't sure about talking about my psoriasis, because it's a private thing, but my daughter said to me, 'Mum, if I had a teenager who went through what you went through, I would do anything to get information out there'."