Your Stories - General

Psoriasis all my life - J, British Columbia, Canada

I am a 20 year old university student who has suffered from psoriasis for my whole life. I was diagnosed by the time I was three and have lived with it ever since. Although my case may not be as severe as some others, I have dealt with all the same problems. I have tried all possible treatment. External and internal. I have done UVB treatments and tried steroid pills and injections. The best treatment so far for me includes strong alcohol based medications applied after a long socking in mineral oil. I have psoriasis on every part of my body that has dense hair. Therefor, my scalp, armpits and genital region. This has created many problems in my social life, although not visible because I am so self conscious that any boyfriend will think I have some sort of sexually transmitted disease. Now I am in a serious relationship, and my partner is very accepting of me having psoriases. So although I understand about how upsetting having psoriasis can be, because I have had it for all 20 years of my life it is now very easy for me to tell people in my life about my problem. I have realized though those who matter don't care, and those who care, don't matter.
(March 2008)

Psoriasis and Stretch Marks - Ellie, Suffolk, UK

I found out about my Psoriasis when I was 16. My family was buying
a newly built house, however it wasn't ready. So we were homeless. My
parents went to live with my Nan and me and my brother were sent to my
Aunt. Here I was very unhappy and one day I noticed a red mark on my
leg. I didn't want to tell my Aunt, and my parents were a long way from my temporary home. So I tried to forget it and it grew for about 4 months spreading on both legs up to the hips and around the genital area. I was very embarrassed and I hated looking at it. Eventually I told my mum and I went to the doctors. I was prescribed various creams and ointments but not many worked. Finally I got given Dovobet ointment. It seemed to work. However after the psoriasis had cleared I got stretch marks from the use of the ointment. After stopping for maybe two weeks, it returned. I am still trying to get rid of it. But it has left me with a very long confidence level. Me being 17 now I'm starting thinking about guys and the psoriasis really doesn't help. I'm embarrassed but it's nice to think it isn't just me.
(August 2007)

Difficulties Living with Psoriasis - Alex, USA

I have psoriasis it sucks I first notice a patch of irritated skin on my elbow during my senior year of high school. It was actually on spring break when it first showed up on my left elbow. I had no idea what it was. I don't no y or how it showed up but it could've been due to the fact that I was drinking heavily during spring break. I went home and went to the dermatologist and she confirmed that it was psoriasis. I don't have a bad case, I'm now 20 years old and have had it for about 2 years, its not my physical pain but my mental pain. I use to be the most confident kid in the world, but now that I have psoriasis I am anything but that my social life has completely deteriorated and people now walk all over me. I use to be really into my body and go to the gym 5 or 6 times a week but now a days I don't even wear T-shirts. It really has effected my life negatively and I hate living with it, I think about it every day. I am a typical college kid except I am living a lie no one knows about my psoriasis except my immediate family and possibly a couple of my friends. I think about it every day especially when I am under the influence of marijuana or alcohol, which is pretty much a majority of the days. I hate having this disorder and I have no idea how to cope with my emotions. People tell me they see a difference in me and I have no idea what to tell them in response I am so afraid that no one will be accepting of my disease and that people will laugh. My friends consider me to be a good looking kid that is very confident of himself but deep down inside I feel nothing, I feel that no one will ever love me and I blame everything on the psoriasis. I have to change something in my life but I don't what to do. (December 2006)

Several of my family have Psoriasis - Maxine, Chessington, Surrey

My Dad, sister and myself have psoriasis and my husband also has it. One of my two daughters also developed it. After a nasty relationship my sister had it really bad; you couldn't lay a pin between it as it was all over her body. However mum took her to a acupuncturist and after numerous treatments it cleared to only the odd spot. My Dad on the other hand has tried loads of different treatments. However on holiday in Portugal a few years ago he had a really bad flare up that closed his eyes so he couldn't see. He went to the doctor who gave him cortisone injections that have cleared his completely. My husband on the other hand has had light treatment that does work but he can't have anymore because he has had his lifetime amount of UVA. He's now on Dovobet that is OK though he feels like a butterball turkey when creaming up. I on the other hand can't be bothered cause if their is a cure for one the doctors are not prepared to try it on you only to try something else that either stains your skin which makes you look worse than psoriasis it self. Or you feel like a greaseball. I have tried creams shampoo's and potions and nothing works even the sun makes mine flare up! (September 2006) Contact Maxine

Living with Psoriasis - Chrissy, Eastbourne, East Sussex, UK

My dad had a terrible accident when I was 10 and was killed, mother sent me away to live with an auntie; since then I've had psoriasis. Bullied at school for having the lergie, I grew up pretending it was not my problem but everyone elses. I knew if I get stressed it comes out. There have been times when my entire body has been covered apart from my face. I've tried everything. For the last 10 years I have willed myself not to get stressed, but all good intentions go to the wall. After my husband left I brought up 4 kids on my own, worked full time. Two kids left home with 2 still here and going through the teenage years. Am tired and feel really down. My skin is suffering again am covered. Doctor just gave me a tube of Dovobet. I used on one leg then it's empty. We are having a heat wave, but I just can't face exposing my self to the public. Am getting to old to keep fighting this. No man looks at me when my skin is bad. I feel very alone, although the kids try their best to help. But I see their friends look away in horror at my red raw skin. I've never written this down and told anyone how I feel. Found this site by accident. Thanx for listening Chrissy (24 July 2006)
Contact Chrissy

Reflections on living with psoriasis - Paul, Fleet, UK

I am a 43 year old man who has had psoriasis since I was a toddler. I can recall, aged 5, my mother having to apply greasy ointments to my body (primarily knees, elbows and lower legs) against my will. I didn't like the feel of the greasy ointment then and, forty-odd years on, still don't! As a child, and particularly as an adolescent, I was very self conscious of the inflamed areas of my skin. Worsened in adolescence by a new problem area on my scalp. It looked like I had terminal dandruff and I was extremely embarrassed by it.

As time went by and I grew older I realised that it was affected by several things:-

(a) stress and worry made it worse and it spread to other areas
(b) illness seemed to make it worse
(c) sunshine made it recede and sometimes disappear.

Again, through the years, I have tried different lotions and potions to try to control it. All have been either unpleasant to apply or unpleasant to keep on. The steroid ointment, Betnovate, is greasy and if covering larger areas, makes your clothes stick and leaves grease stains on them. I used this ointment for decades as it was the only thing offered by a string of GP's.

I had a brief affair with a 'miracle' cure lotion; a blend of banana nutrients and, inevitably, tar. This was good because of its grease-free properties but stained clothing brown and made you smell like a newly tarred road. It also seemed no more or less beneficial than Betnovate.

The Dead Sea, in Israel, is renowned for its healing properties on skin problems. A combination of, apparently, very highly mineraled water and below sea-level geographic positioning. The West German Health Service used to send, as part of their treatment, sufferers to a health resort for a week or two. The results were quite remarkable and are verified. Knowing this, I ordered some packs of Dead Sea Minerals which I had to soak in for hours. Well, it may well be a miracle cure in Israel, but not in my bath!

I have had some successes though. My very scaly head (scalp) that developed as a teenager, and was a social curse, was completely 'cured' by using Neutrogena's T/Gel therapeutic shampoo. I have continued to use it to this day and it has always kept it away. Good stuff!

Secondly, I am currently using Dovobet ointment (Leo Pharmaceutical) for my body. Whilst is has the same greasy properties as Betnovate, it does reduce, significantly, the problem. However, after a recent bereavement and expected stress-related 'trauma', the expected spread to the parts other skin problems cannot reach. I am again coping with the tedium of twice-daily applications of a sticky, greasy, time-consuming ointment that, though quite effective, I had using but does the job.

As a footnote, it does seem strange that the problem seems to have a determination of its own. If I succeed in getting rid of it completely in one area, it always reappears somewhere else! (September 2004)

My life with psoriasis - Miranda, Basingstoke, UK

My name is Miranda and I have suffered with psoriasis now for about 10 years. It started just after my father died and I had to close my shop due to cash flow. The first thing I noticed was my right elbow became more and more scale like and itched till I thought I'd go mad. The family were constantly telling me to stop scratching, but it was all right for them, they weren't itching!!

Gradually, it became so bad that it started bleeding with my constant scratching and nothing the doctor prescribed made any difference. On the positive side, during the hotter times of the year (yes we do get them occasionally), people would assume I'd fallen over and badly grazed myself, so I got lots of lovely sympathy. By now the back of my head, having felt neglected by the attention I was giving my elbow with all this scratching, decided to join in. At first just a little area to see what reaction I'd take and then having found this worked and had got my attention, spread itself over a patch about 4" by 4". Of course with the darker colours one tends to wear during the autumn and winter I was walking around looking as though I had been out in a blizzard. However I found that following a very satisfying "scratch/dig" of my head, by holding the neckline of sweatshirts or cardigans either side of the neck, a slight tilt of the spine backwards and a brisk shake of the garment would deal with the problem. One becomes quite deft at this after a time. Was that it, no, my ears now decided that this seemed to be a good game and so they joined in - from just the inside the lobe, working back into the inner ear.

However, help has come quite recently. Various doctors at our local surgery have prescribed this and that to no avail. Then a new doctor at the practice suggested I try Hydrocortisone Ointment. She stressed Ointment not cream so my husband bless him went to our local chemist for me. No they did not stock the cream but suggested Boots. Sure enough my dear other half returned triumphant with a tube of said Ointment. I am delighted to say that whilst it does not "cure" the problem, when it flares up I use the ointment and within 24 hours I am back in control of my ears.

Recently I visited the practice on a totally different matter and the Doctor (a different one) asked to look at my elbow - as you do - "Ah" he said, "psoriasis". Have you tried Dovobet Ointment?" "Yes," I said, "a long time ago and it made no difference". "Well" he replied, "it's very recently been changed". "Fine" said I "I'll try it out". He was right, after using it for a very short time my elbow looks almost normal and doesn't itch!

As for my head - well it is still beating me, particularly at night when I get hot and my head is on the pillow causing perspiration. I get round this my lying on my tummy and that helps a lot. Unfortunately scratching the back of my head has become a habit I find myself doing when deep in thought about my work (I have a business offering Accounting Services from home). Still I think as my life gets less stressed and I relax as I reach retirement in a few years time, even the back of my head will let me have some peace.

Thank you for reading this and if you think I have treated the very serious subject of psoriasis in a flippant way, maybe I have. But then compared with many people my "suffering" is very light. I know of people whose faces are covered or even their whole body. They are real sufferers and so, knowing that things could be a lot, lot worse for me I try to look on the bright side. (September 2004)

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