What's it like having psoriasis?

[Fred]

I have been asked many times by friends and family "What's it like having psoriasis" I always say it is difficult to explain, I usually say you will never understand. A bit like a Man can never understand what it feels like for a Woman to have premenstrual syndrome, and a Woman can never understand how it feels for a Man to get a whack in the testicles.

Sometimes however I do try to get it across, and I was wondering how other members would explain What it's like having psoriasis?

I would say first off when you find out you have psoriasis, it's not so much of a big deal as you are given some cream to slap on and it will go away. That by the way is absolute bull**** as you soon find out once you get it it's you buddy for the rest of your life.

You constantly search for a cure, you listen to advise from your family and friends, you spend a fortune on fake scams or expensive simple moisturises, you believe it will go away one day. But as much as you appreciate your friends and family trying to help, one day you realise it's not going to go away.

That's when the fun starts as you suddenly become aware that others are always looking at you, you also start to feel like a leper, you start to get self conscious over your appearance, you start to get depression. You know the genuine members of your family and friends are trying to help, but sometimes you just wish they would leave you alone to have a damn good cry.  

After a few years you realise there is no cure and you're stuck with it, you are that leper that no one wants to know, you are that person that everyone looks at, you still get friends and family saying "Have you seen in this magazine how this person got cured" Grrrrrrrrrrrrrrrrrrrrrrrrrr Leave me alone.

Your life is completely changed, you are constantly checking for psoriasis on your clothes or in your hair. You don't want to visit other peoples houses as you will feel so embarrassed if you notice even a tiny bit of psoriasis on their sofa, and as much as you try with all those greasy creams you just can't hide the psoriasis on your face or your cracked and bleeding hands.

It goes on and on and on, your friends and family will keep telling you to try this or try that. Your doctor will keep throwing creams at you and telling you to come back if it's not clear in a few months. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr It Won't Fooking well clear  

Then one day you are covered in the stuff, there are flakes as big as large coins, you are pulling out clumps of hair, you are leaking sebum or in some cases blood from those horrendous sores all over your body. You itch like hell and then you start to see how big a scale you can get off in one piece, it becomes an addiction to just keep picking at those scales to see if you can better your last one.

One day you notice you are starting to get more and more tired and you just feel like crying yourself to sleep, you may even get to the stage of thinking enough is enough and you just can't cope any more. And still your friends and family (if you have any left) say "Why don't you try this" Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

You want me to explain what it's like having psoriasis? Go and rip the top layer your skin off and rub stinging nettles all over the raw flesh, and just for good measure rub in a good dose of Salt and Sand. Wait don't go away were not done yet, you now need to go walking down the street with everyone pointing at you, you also have to stop going out as you feel to embarrassed by your appearance, you also have to keep going to your Doctor who will give you even more greasy cream or if your lucky enough you may get something like a modern treatment (No change of plan keep trying the cream or a bit of sitting under a light) then one day you get slight relief but it comes back again, you are sore you look like a leper, your confidence has by now completely gone out the window.

Hell I can't explain what it's like having psoriasis, and don't even get me going on psoriatic arthritis (I would rather be covered in flakes of dead skin as opposed to not being able to move) But I can tell you this, be very very careful of what you think of people with psoriasis, as It Could Be You Next.  

To sum up: It's painful, annoying, embarrassing, and will change your life for ever.

Maybe other members will post their answer to "What's it Like Having Psoriasis"

[bav101]

Very well written mate.

A few years ago I used to attend college on my way in a little kid of about 3 or 4 looked up at me and pointed and said "mummy whats wrong with that man's face?" At the time i had a huge patch of P under my left eye, it was just under my eye to just under my nose and about as wide.

His Mother looked mortified and just said, "Stop pointing at the man darling" grabbed him by the hand and literally dragged him away, which was cool because I was running late anyway.

A couple of days later in college it had been raining and my face was wet and the patch showed up even more than usual, my lecturer looked at me joking around and said "who the hell you been fighting?" I was like no one, its something else, he looked like he wanted the earth to open and for him to fall through it, he was so embarrassed the poor sod.

For my part after being dumped by a gf after a flare up, and being told every excuse in the book and then some as to why someone would refuse to date me, i gave up. Resigned myself to the fact I would probably be alone until my time ends on this planet. I had a bit of a cry I will admit, but I'm ok with that I've met a couple of good women, whom I'm really good friends with, hell almost married one of them. But in the end its always in the back of my mind. But I've accepted it and moved on.

If i get lucky for me it'll be like I've won the lottery 15 times over. If not well its how life is. You make the most of the hand you were dealt with. If I find someone that would be awesome to, but far to many people look on the outside and not what someone is truly like and look beyond what they can see.

If someone asks me what its like, I just say imagine being in a room full of people and feeling alone.

I often joke with my mum that I must have been some evil guy in a previous life to be punished like this in this one.

[Fred]

If someone asks me what its like, I just say imagine being in a room full of people and feeling alone.

Good sum up Bav

[Turnedlight]

I hate it when my face flakes because people keep suggesting I use moisturiser like I've never thought of that myself. Moisturisers just give me greasy flakes instead of dry ones, it doesn't actually stop the flaking..

When I got quite bad I told the derm I thought I was allergic to moisturiser because some of it it stings and burns so much when you put it on. They did a patch test and concluded that though I'm allergic to some metals, I'm not allergic to moisturisers so I was basically told I could use it and I'd be ok.. Some nights I'd delay using it for ages because I knew how much it was going to burn. I'd spend the next quarter of an hour squirming in pain and sometimes I'd run in the bathroom and wash it off. There were some boo hoos going on then when no-one was looking..

Now I know which creams are soothing rather than painful - none of them come from the doctor.
I don't use them much any more, they make your clothes feel clammy.

When I had the erythrodermic thing it felt like flu.

The only time I got really self conscious was when it was on my face and neck, people's eyes flick to it subconsciously, they don't mean to look but you notice them doing it.

[Fred]

I hate it when my face flakes because people keep suggesting I use moisturiser like I've never thought of that myself.

Yep don't you just love those that keep advising, I know they mean well but they can talk so much rubbish sometimes.

On a side note have you tried Coconut Oil I'm a huge fan and use it regularly as a moisturiser.

[Turnedlight]

Yes I have, it's ok but weird - solid until you touch it and then pretty runny! I once made my own concoction, I melted down some coconut oil and some Vaseline together, and poured them into the pot to solidify. The result wasn't bad, easier to smother on anyway. I've made soaps from scratch etc in the past too, must get it all out and have another go!

[jiml]

For me my life has been spent avoiding situations where i was expected to show some skin, at age 18 I was an engineer travelling the country repairing and installing equipment, at the time I was heavily using steroids, this had a dramatic effect on my skin causing it to thin ... I would walk into things and my legs would split, I could feel blood running down my leg and rather than show my legs to others I would slip away and pull the skin together and dress the wound and return to work with nobody but me knowing, I was very secretive and as far as I know not many knew I had psoriasis . I was in long sleeves throughout the summers unless I was lucky enough to have had some sun and been clear. I was lucky, if you can call it lucky not having it often on my face. I was very introvert and refused many enjoyable outings for fear of showing my skin, as others have said I hated sitting in other people's houses, it was always a quick sweep of the scales from the sofa before anyone else noticed, sitting at the back of rooms so no one was behind looking at my scalp, my cars were always full of scales and I was constantly vacuuming scales
My family were always supportive but I did miss not swimming with my daughters while they were growing up, unless it was in the sea on a quiet beach

Although they were supportive they always said when at the beach " oh take your shirt off no one else cares "
Well I bloody do so it stays on
I guess I'm saying it shaped my life and it was a constant worry, I have felt totally liberated since being on fumaderm and I no longer have the old fears ..... But I'm constantly aware that I could be hit again at any time. But I'm fully enjoying my life for probably the first time since puberty

[Fred]

I guess I'm saying it shaped my life and it was a constant worry,

Yep it certainly is a life changer Jim, and a worry.

For some it's to much of a worry and unfortunately we have seen some sad results, let's just hope more people with psoriasis find us as we know what it's like and we can support each other.

[jiml]

I guess I'm saying it shaped my life and it was a constant worry,

Yep it certainly is a life changer Jim, and a worry.

For some it's to much of a worry and unfortunately we have seen some sad results, let's just hope more people with psoriasis find us as we know what it's like and we can support each other.

This site has been a great help to me to come to terms with the disease, I am now happy to discuss it with anyone, I tell many of this site and leave cards at the hospital with the receptionist and have asked to have the little poster put up, this site together with Fumaderm has helped lift my self esteem and I am now quite confident I feel

[Kat]

Fred, you summed it up pretty well!  I thought I was weird for seeing how big of a scale I could get off at one time.  

I could cover up the patches on my leg, back, stomach, elbows... but my ears, scalp and face were the ones that made me feel self conscious.  I had it for almost a year before going to find out what it was (which was only a couple of years ago now, I did not have it in my younger years)  At first, I thought dry skin and it started with the ears and they were peeling like crazy and looked awful.  I had an appointment with my (ear, nose, throat) doctor for my hearing and he put me on a cream.  Didn't help so my next gp appointment I got put on a different cream for eczema... also didn't help.  Then my scalp started and patches started appearing out of nowhere.  Finally I went to a dermatologist who diagnosed the psoriasis, which was a relief till he explained it was a life sentence and there was no cure, only treatments.

As supportive as my family is, I felt quite alone at times.  I started avoiding going places and when I did I'd sit with my back to the wall so no one could sit behind me.  I knew I had scales in my hair, the ones constantly on my shoulders were a reminder and I was ALWAYS checking my shoulders (still do)  I thought about throwing out every dark colored shirt I owned as I was thinking I couldn't ever wear them again, it showed the scales too much.  If I visited family (which was rare), I feared they would have to vacuum after me so would sit very still hoping I didn't leave a trail.  Even though now I am fairly clear, I still have problems with my ears and scalp (minor compared to before) and each day I check to see if it's getting worse.  You start to find your life revolves around psoriasis, either treating it or waiting for the next round.  

I'm a fairly positive person, but it's life changing no matter how positive you look on it.  This forum has been therapy for me, to know I'm not alone and there are people who know how it feels without words to explain it.  It is very hard to explain!