Psoriasis stories
If you're living with psoriasis, you're far from being alone. This is where you can hear other patients' experiences of the dry skin condition. If you’d like to share your own story, please get in touch with us!
Emotions
Opening up about my psoriasis has been the best thing I've done
I was diagnosed with psoriasis at the age of 6, but it wasn’t until recently that I completely opened up about my psoriasis and I’ve started feeling comfortable in my own skin. I always used to avoid the topic of my psoriasis because I was ashamed to talk about it. I was scared to open up about how my health was making me feel because I thought no one would understand and that people would think I’m being silly for worrying about a skin condition. But since opening up and starting my blog, this past year has been the biggest turning point in my journey with psoriasis.
Read the full storyDamini, UK
Leigh's psoriasis stories
I've had psoriasis since I was 9yrs old , chronic psoriasis. I was bullied at primary school and a little bit in secondary school. I used to go to hospital every day after school for sun lamp treatment which lasted 16 seconds on each side. That went on for a couple if years and I was admitted to hospital several times, my longest stay being 2 months. He last time was when I was 18yrs old and I left some cream on and it burned my legs and removed some top layers of skin.
My mum took me everywhere to try alternative treatments, from acupuncture to Chinese herbalists and special diets but nothing worked. The coal tar treatments and steroid creams helped but nothing cleared it all up. I was helping my mum at work one day and popped out to the shop and noticed a magazine with a lady on the front whose psoriasis was very bad and then another picture with her skin all clear. I bought the magazine and then went and showed my mum (I was about 28 and an air hostess then).
This lady used the Oregan range. At first my skin got worse then it started clearing up. My psoriasis affected my relationships as I didn't think anyone would accept me and I often chose the wrong men because of this. I was too scared to be just me. When my skin started clearing up it gave me a new lease of life and my confidence back. As I said in my previous story I used to hate my body, psoriasis isn't a life threatening condition but the psychological damage it can do can stay with you for years, I was a great swimmer and swam for my school but when it came to any events I would pretend I was ill so I didn't have to go into the water and let everyone see me, I even used to hide my creams. If by me telling my story helps anyone then I'm glad to do it as I know what it's like. We don't want sympathy just acceptance and an understanding that it's not contagious and we are human beings !
Leigh, UK
Mindful of my skin
A skin condition has nothing to do with the mind right? I mean, the brain and your skin don’t even touch. It’s like saying your head can fall off if you get a stomach upset. Yes, of course being unsightly makes one self-conscious but everyone worries about their appearance – everyone thinks their bum/nose/stomach is too big. Bad skin’s no different.
Except that psoriasis is much more complicated than that. It’s a skin condition that is the result of a deficiency of the immune system, but it is also exacerbated by stress. Of course, having the condition is stressful in itself, so it provides its own succour. Seeing it start to make a battleground of your body inevitably induces anxiety, which acts as a fertiliser for it to take root.
I was always dubious about the stress thing. I was brought up to get on with things and not complain about things that can’t be changed. Yes, when my skin was bad there would be plenty of things that could make me unhappy: the unkind remark from a drunk walking past asking what that was all over my face; the casual cruelty of a “well I hope that’s not catching” by a stranger close enough to know I’d hear him; the unconscious flinch from a shopkeeper passing over change. But it’s not cancer. I have no right to feel wretched, I’d think, and the subsequent guilt only encouraged the smog of self-loathing to tighten its grip.
Read the full storyToby Hadoke, UK
A lack of understanding
Hi, I have had psoriasis for 14 years now. I was 18 when it first showed its ugly head. In some ways I have been lucky as my Mother has it too, and we can talk to each other about it, but I have also seen the difference in the treatment that we have had over the years, not just medical but how people look at us. As I am 31 years younger than her I have been told in the past that I cannot have the same treatment, as it would be 'too long term' (another way of saying to expensive), which kills me, as I see how well it has worked for her. I have even had Doc's tell me that I do not even have psoriasis, only to have them proven wrong by dermatologists (I have moved a lot, and so seen a lot of doc's who seem to not want to look at my notes!). I think the worst thing though, is the lack of understanding, how it effects my mind. I am just so unhappy, and as you all know, that just makes your skin all the worse. OK, so I have gone on for long enough, and I am sorry for being so down, but, just had a flair up of the worst kind, and as much as my son and husband tell me they love me it does not seem to touch on the depression I feel about it (can’t even go out shopping for clothes with my best friend without wanting to cry, as always have to find stuff to cover me up, and not too dark in colour!) arrgghhhh....
Alexandra, Wolverhampton, UK
The emotional effects of living with psoriasis
I was first affected by psoriasis when I was about 14. It started with rough "ugly" elbows. When I got red sores on my knees my mother took me to a dermatologist. He prescribed 3 or 4 different ointments and creams and a shampoo. None of them worked. I am now 22 and have no psoriasis on my scalp, (I use Nizoral shampoo every day, you can find it anywhere shampoo is sold) but still have it badly on other parts of my body. I have about 50 different sized lesions on my legs and ankles and both knees are completely hidden by solid lesions. My elbows are also completely solid with psoriasis. I sometimes get a lesion or two in my eyebrows and almost always have at least 3 on either one of my hands and or wrists. This has me wearing long sleeves, long enough to cover my hands, and pants year round.
During the winter, this apparel is not questioned, but when it's 100 degrees outside and I'm completely covered, people ask questions. I often say, well, I work in air conditioning and I get cold. Or that I'm dieting and the more clothes I wear, the more I sweat. I've told many lies to many people who have spotted a lesion on my hand or wrist when I wasn't careful to keep it hidden. I once wore and Ace Bandage around my hand and wrist for 3 weeks to cover a bad outbreak. I told everyone that asked that I sprained my hand and wrist doing a cartwheel. I am currently in a relationship with a great guy, but he doesn't know about my psoriasis. I fear that he wouldn't be able to deal with the appearance and find some reason or another to leave me. It's hard to keep it a secret from someone you love. He wonders why I refuse to make love with the lights on, or even with a candle lit. He gets frustrated when I stop him from caressing me. It bugs him that I change in the bathroom, or wait until he's out of the room to change. I live in fear that he will see my psoriasis and be disgusted by my appearance. I also fear that he is going to become so frustrated with my inability to "open up" and leave me for that reason. I can't explain how emotionally painful it is to have psoriasis, you only understand if you have it. As much as I hate to admit this, I often wonder if my condition will lead to my suicide. I'm not always depressed, but when I get bad lesions on my hands, eyebrows, and ears, and have a hard time hiding it, I avoid work, friends, family, and the public. I pretty much sit at home and think "this is forever...... there is no cure" maybe it would just be better to end my life than live with it another day, month, or summer. I've never been suicidal or had thoughts of it until the past few months. Being in love, and having someone love me, makes it worse that I can't be the "beautiful" woman he thinks I am. There's no trips to the beach, no plans of vacationing in exotic places, no sporting sexy lingerie for him. I generally dull the emotional pain with alcohol. But like always, sobriety finds me and I'm usually worse off than before. I probably won't kill myself, but the idea crosses my mind quite often. I know I'm not the only person who feels like this, but when you're the only person you know with psoriasis, you feel like a leper, an outcast ... I look at people who don't have psoriasis, wearing their tank tops and short shorts, and almost hate them because they don't have to deal with it. I make deals with God all the time to just cure me ... I'm losing faith on that one.... I've decided that I will never get married because I know that I will never be able to be seen in anything that doesn't cover me completely. I've also decided I will never have kids. It's bad enough to have this disease myself, let alone give it to my child and have them have to live with it. I've come to terms that if I die old, I will be alone. Psoriasis has had I think, the worst effect on me it possibly could, and I hate myself for having it.
Jessica, Grafton, USA
People who stop and stare
Real friends won't abandon you. That's what I've come to learn. It's been about 2 years now since my psoriasis began. As you can imagine, I was about 16 and it was extremely confusing. People pointed and stared. It didn't feel good. (But recently I've come to realise, real friends won't abandon you. I know it's tough living with this, and I know a lot of you have it worse than me - I have about 30-40% covering). Altogether I have Nail and Plague Psoriasis. The worst areas are my Stomach, Chest, Scalp and Ears. But as time goes on I have faith that I will get better. It’s hard being an 18 year old, with a future prospect of constantly having this. I have a loving Girlfriend who helps me ALOT and actually found this website for me. A lot of you might think you are ugly and no-one would ever like you, that's a fear I've had myself. And it feels no matter what anyone tells you ... It'll never get better. What I've learnt is that my attitude affected my psoriasis. When I feel confident it receedes a lot, which makes going out in a T-shirt a lot easier. We are sufferers, and therefore have a lot more mettle than the people who know nothing on how we feel. They aren't staring at your condition. They are admiring us for being survivors! Surviving something not just physical, but mental too.
So next time some person stares, remember... we are the strong ones!I'm feeling lower at the moment than normal. And it does really suck :( My arms used to ABSOLUTELY PLASTERED in psoriasis, but since going out in the sun, one day, and going into the sea, it has got so much better! I told my friends about my psoriasis before I went to the beach with them in a T-shirt, and they said that it's not as bad as it looks. I think having this makes us see ourselves as monsters, when really... we are just different. We differ in physical appearance just like anyone else. Flaking can be a problem for me, but I find that wearing slightly lighter clothing helps (Hard for me seeing as I'm a near goth LOL) but my denim jacket never lets me down there.I hope I've helped a few of you, and that the next time some random person stares, you remember. We are the powerful ones! They are admiring us!
Stephen, Cardigan, Wales, UK
My fiance has supported me
When I was about 12 years old I started to develop small patches of psoriasis on my elbows. Up until last year my experience with this affliction was contained to small outbreaks on my elbows, mainly in the winter time, which was no big deal. Last year, however, I flared up all over my body, approximately 60% to be exact. Not to sound dramatic but my life seriously has gone downhill since then. I have always had a lot of self-confidence and have also been a very big people person. Now though, people often look at me as though I am going to infect them with some wretched disease and somehow fail to understand the term "not contagious". Honestly though, I have explained Psoriasis to people so many times that now I am plain fed up with it. I've tried many different skin meds for my Psoriasis (ie Dovones, Olux, Elidel, etc.) and the only thing that has worked thus far is Protopic, which was prescribed for my face. My dermatologist has recommended Methotrexate but after a lot of research I decided that the risks involved with the drug were too high for Psoriasis, as Methotrexate was originally introduced as a cancer medication. In a way I feel like it is one of those things that a person has to have to really understand. My professors sometimes look at me like I'm lazy when I try to explain to them that some days in the colder months my lesions bleed so bad that I am physically unable to go to class, that is unless they want me to bleed all over their lecture hall and cause a silent panic for other students. My friends and family have been great about the whole thing and try to keep light attitudes about the situation so they decided to nickname me Dot (after all of the "dots" of red scaly spots). It kind of hurt at first but I know that they are truly just trying to make me laugh at something that has, at certain points, drug me down. My biggest supporter, however, is my fiancé who was there when my skin first started to really flare up. From my own experience with men I know that a good majority of them would run the other way if their girlfriend out of nowhere developed these hideous lesions everywhere. But in reality, this has shown me what people are really worth my time and what ones aren't. To me, if someone is put off by my condition after I explain it to them than so be it, they aren't really people who I would want in my life anyway. My fiancé said something to me that I will never forget though, something that I think of when I get really depressed about it. He said, "Laur, I would never let some scales make me leave the person I know I am meant to spend the rest of my life with. What would that say about the man that I am? Don't let this define the way you live your life, you've always been beautiful to me and always will be, no matter how much better or worse it gets." I don't know, maybe it's sappy to some people, but to me, just knowing that there are those individuals who look past the surface of things makes me smile on those dark days. I know that some part of me will always be self-conscious about what I wear and how I present myself but I guess I am OK with it now because it's just another part of who I am. Let's just hope it doesn't show up too badly in my wedding photos.
Lauren, Philadelphia, USA
Stress has an adverse affect
It was October last year since I posted my first message. Since then my treatment pattern has changed. As my skin condition has improved slightly, I no longer attend day clinic. Instead, I have a regular three-monthly check-up at the clinic to review my medication. I have recently been prescribed Dovobet ointment. This is applied once in the morning. Then in the evening I apply Dovonex ointment. I also use Diprobase cream randomly and Diprosalic scalp application. I suffer from stress and I believe that this has an adverse affect. For the last two months I have been receiving a weekly neck and shoulder massage privately (not prescribed). This relieves the stress and hopefully will help relieve one of the foundations that cause psoriasis. I have added this report in the hope that it might help others in their endeavours.
Mario, UK
Stress and my psoriasis
I have been suffering on and off with psoriasis since I can remember. Now I am 20 and recently diagnosed with Hodgkins Lymphoma I can see where my psoriasis comes from. STRESS. Looking back I can see that my stress levels control how bad my Psoriasis becomes. Have a think back if you have it, may be this??I am lucky in some cases as I only have it on my scalp and in my ear but even so it's not nice and especially when it’s weepy and makes me itch all day long. As I'm sure like many of people with Psoriasis, I have tried everything for my scalp and nothing seems to work. Although I can say washing your hair with Betnovate prescribed shampoo and then putting Tea tree conditioner on the scalp, wrapping it in a hot towel and leaving it overnight can help cool, soothe and de-flake the area. I hope this helps others.
Becca, Hampshire, UK
Stress probably triggered my psoriasis
I am 24 and I have had psoriasis for ten years now. I am the only one in my family with it, and that includes extended family. It started after I developed my heart condition in eighth grade. I remember I was an emotional wreck from my heart condition because it took them a year to diagnose it. I have tachycardia, a heart murmur, and low blood pressure. The combination kept making me pass out. I felt so horrible, so completely exhausted, and my chest hurt so bad that I remember wondering if I was going to die. It was shortly before I was diagnosed that my first flare up of psoriasis occurred. Looking back on it, it was probably from all that stress. I woke up with some lesions on my hands, and they quickly spread all over my arms. It has been ten years now, and the psoriasis has never spread past my arms and hands, but it has never receded either, probably from the stress of my other health problems. The side of my right hand is completely hard from it and painful. I developed psoriatic arthritis a few years after my first psoriasis flare up, and it's been a constant ever since.Looking back on it though, I've been lucky. I woke up after my first flare up, saw the lesions, and put on a short sleeved shirt anyways. I have never hidden it. People stared, yes, but not a single friend of mine shunned me, and I think that's what made the difference. I was very nervous when I went out on my first date nine years ago because of the psoriasis. What he said to me that night has stuck with me since. He looked at my lesions and asked what it was. I, of course, answered, "It's psoriasis. It's not contagious." Without even asking what psoriasis was, he rubbed my lesions and then said, "It feels cool. I kinda like it." I spent years after that oblivious to people's stares. Just the thought that some people out there LIKE my psoriasis... It's not that it doesn't bother them, they actually like how it feels. It felt good. There are still people I run into who will refuse to touch me and who avoid me because of my psoriasis, but I think back to my first boyfriend and my friends and my husband who thinks I am beautiful. I remember what my first boyfriend said and how my husband does not even seem to notice my lesions. It helps to know some people don't just tolerate my psoriasis, but accept it.
Marie, UK