The Hidden Enemy

[Fred]

This thread on the old forum has had a lot of hits. and it gives an insight into how Psoriasis can affect ones mental health.

I have copy and pasted the posts and mentioned the author of each post. It's a good read and I would recommend you give it a look.

[Fred]

Lostintranslation Wrote

Ok so we all know what psoriasis looks like, we know it itches, we know when it cracks, splits and gets scratched it hurts. But what about what people don't see, the mental torture of it? Luckily for us things are changing, dermatologists are starting to understand the psychological damage it can cause and now use things such as 'quality of life index' to check just how much patients are affected. Studies have revealed high incidences of depression among sufferers and also suicidal ideation (basically meaning we think/have thought about it even though deep down we probably wouldn't do it) higher even than among groups with terminal diseases. Treatment plans are drawn up taking this into account to a degree but in the end it's down to each individual to discover how to cope with the emotional aspect of it, the road to acceptance is a long and often difficult one for many of us. There are numerous different approaches to this and it's interesting to hear how others cope so lets get the ball rolling and share some tricks and stories folks, I'll be brave and go first

[Fred]

Lostintranslation wrote

I've spent all afternoon trying to work out how to tell the story of the emotional effect my psoriasis has had on me, I've never managed to express out loud the self-loathing, shyness and mental agony it has caused me over the years and I'm realising I can't put it all down in writing either.

We've all had bad experiences with the way people look at you, try not to touch you and so on and so forth and know how totally worthless it can make you feel.

All I can say is I tried to rebel against it in my late teens, tried to cope by being a typical bad teenager, messing up at school, drinking too much, sleeping around (always in the dark, always with half my clothes still on, usually extremely drunk). Needless to say that didn't really work.

I went through my twenties hiding under as much clothing as possible and struggling along, I was lucky enough to meet my husband who amazingly managed to see the person underneath the scabs and the flakes and then my daughter was born. I must add it wasn't all that severe back then.

Then I hit 30 and things went down hill fast. I had the worst erythrodermic flare imaginable and my joints (which had been behaving for a while) decided to stop playing ball. I just wanted to die, I couldn't bear to live like that, I had it all planned out. The only thing stopping me was knowing how much it would mess my daughter's life up if I killed myself.
The dermatologists at the hospital had decided to put me straight onto Methotrexate and put me in touch with fellow sufferers (I hate that word) and it was starting to talk to them and realise I wasn't alone and there were others who understood exactly what I was feeling that pulled me through the darkest part. One person in particular took the time to spend an entire night talking me out of suicide, he probably saved my life that night and I'll never be able to thank him enough for it.
So I started talking and the meds started working, gradually I realised just how close it was for a while. That still scares the living daylights out of me, knowing it's lying there underneath the surface. It took me about a year to get my head round it and learn to accept the guilt about what I almost did.

That's the basic story, now enough of the gloom, how do I cope now?
Firstly I made a vow to myself to never let the depression get that bad again, if I ever think I can't manage I'll be fighting for help in whatever form, I'll try anything rather than go back to that dark place.
I talk talk talk, not necessarily about psoriasis but often with other sufferers (that word again) and I try to laugh whenever possible, I really do believe laughter is a great medicine.
Some time back I realised part of my problem was that I felt useless, so I joined the UN online volunteering programme, it helps me keep busy and the feelgood factor of being able to help others is always a boost.
Now I also lurk on here with my whip, ready to welcome some in and whip others for misbehaviour
I try to look after myself and relax, tried meditation but I couldn't sit still long enough but I work hard to stop the feelings of self-hatred when they pop up, it's not easy but I'm getting there.
I've had a big breakthrough over the last few months, I don't really know why but suddenly I've stopped hiding, ok the meds I'm on are improving my skin which helps but it's still visible yet I'm finally getting my arms and legs out, I've even braved a swimsuit already it's easier than I thought and it feels amazing. Yes, people stare. You know what? I just stare right back at them.

[Fred]

Granny Butty wrote

What a cracking tale!!! Fair play to you, Lost!!

I might start on my own tale in a little while!!

[Fred]

That is brave Lost thank you for sharing, can't wait to read Dovobetty's

*Granny Butty used to be called Dovobetty.

[Fred]

Granny Butty Wrote

Argh! Sorry folks, been meaning to get on with my tale of flakey woe and end up getting sidetracked! (Thanks for reminding me, Poppy!!!)

Ok, well I've had psoriasis for about 13 years - I started off with plaque psoriasis in patches on my lower legs shortly after some surgery - I wondered to begin with whether it was a bite, or even (gasp) ringworm, which was the suggestion I had from a very useless locum doctor. The patches grew over a period of weeks, during which time I had visited my usual GP at least 4 times, with no luck. I was given hydrocortisone cream and told to disappear.

On returning to the chemist for the fourth tube of cream, I was asked what I was using it for by the elderly pharmacist - and obviously I showed him my legs. He told me it was psoriasis, and that I should perhaps change my GP surgery, which I did - and was given Dovonex to 'clear it'! It DID disappear after a while, and I thought no more about it until, after a very messy break-up with a boyfriend, I started to develop what has become the bane of my life. I was diagnosed once more by the same pharmacist (who had since retired) with palmoplantar pustulosis (or pustular psoriasis) which started to cover the palms and fingers of both my hands, and also both feet. As the years have gone by, it has become worse and worse, and the plaque psoriasis has joined in to make life that little bit itchier!!

I have had no remission period in the time I have had it, apart from a couple of days where I had fewer pustules appear 5 years ago while I was on antibiotics for a kidney infection.

I find it difficult to manage the skin on my hands, it's been thinned by the steroid cream over time, and is constantly cracked and weepy. The onslaught of psoriatic arthritis had added to the irritation, as has the nail psoriasis which also crept in!

I have become used to the inconvenience of it, and some days it drives me insane! I get many thoughtless comments from people about it, I get people tutting at the state of my nails, and I've been turned away from clothes shops because they don't want me to handle their items, unaware that psoriasis is NOT a contagious disease. I am frustrated by people's ignorance of psoriasis, and become less and less ready to inform them of their ignorance. I have found that I tend to avoid situations where I feel that I have to explain my condition to others, and I sometimes have a short fuse when I am asked anything about it. It's not the psoriasis which makes my life a misery, it's the attitudes of people around me!

For any 'new' psoriasis sufferers out there, the best advice I would give you would be to ensure that the people you deal with daily are fully aware of what psoriasis IS, and also what it ISN'T! Don't leave your condition open to myths and rumours - set them straight from the start. It doesn't hurt to be a little bit assertive when you deal with people - I wish I'd done it from the start myself!!

[Fred]

Bio Man Wrote

Hi Lost

have been there too long time ago when very bad never goes away though

1 in 10 think about suicidal thoughts and with P 1 in 4

i spoke to a shrink and they where shocked

i talked about the bad times when i was like a time bomb waiting to go off

[Fred]

Lostintranslation Wrote

What a wonderful way of putting it BioMan, it really can be like a bomb ticking away in the background can't it. Just goes to show how difficult it is for even the professionals to understand the psychological aspects of our condition, but things are improving slowly but surely. Thanks for sharing

[Fred]

Coffeewithkate Wrote

Your bravery has given me the impetus I need to tell my story too.
*Deep Breath*

Six years ago I developed, what I believed, to be a fungal infection on my feet and I got some cream for athletes foot. BIG mistake!!! As a result my feet cracked, bled even worse and I also developed huge pustules. The pain was enough for me to end up in A&E who gave me a few painkillers and sent me home with advice to see my GP.

Before my appointment my hands began to go the same way. I was at uni at this point (and also going through a divorce). I couldn't pick up a pen, type an essay or even attend my lectures. I'm not sure how it came about but I ended up at my local Chinese Medical Centre and had a consultation. £400 and three weeks of a strict regime of lotions and pills and I was clear....seriously. I got on with my life, met a new partner, had a baby and never gave it another thought.

In 2009 and 2010 I miscarried twice, one being particularly traumatic as I haemorraged (sp?) badly requiring morphine and eventually surgery and transfusions. Within a month the tell tale signs were back. I didn't have the necessary funds to go back to the CMC so I went to the doctors who prescribed me Dovobet and some moisturiser. It was only at that point I learned I had PPP, that it was for life and I was told rather bluntly that I had to 'just deal with it'.

It has taken me a year to get an appointment with a Dermatologist. In between this time I had to give up work, was made homeless and have been dealing with my son being diagnosed as severely hearing impaired. I had to stop socialising (too painful to walk anywhere), I took to sleeping on a sofa bed as my bathroom was downstairs and, quite frankly, I was mortified at how many times I wet myself trying to crawl to the loo in time. I lost interest in my appearance and rarely bothered getting dressed or eating. My house became a wreck. I tried to clean the kitchen by whizzing up and down on a computer chair and god help me if I got any cleaning fluids on my skin. I've lived with clingfilm, plastic and rubber gloves for ages now. My breaking point came when my son had an accident upstairs, cutting his arm and I could barely crawl upstairs let alone run like I wanted to. I broke down completely and told my partner to move out and take our child with him as I couldn't look after him properly (he didn't btw :-) ).

As things stand now we have just moved into a smaller, more manageable place and my dermatologist is considering starting PUVA. I have become very forthright at telling people that I am a Psoriasis fighter (I don't like the word sufferer either) and that I require additional help with everyday situations. The majority of agencies/people I deal with have been quite receptive. I'm still fighting for counselling though.

Today is a good day mentally but I now have patches of psoriasis spreading up my legs, on and in my butock cheeks, my 'lady bts' and my underarms which I am going back to my dermatologist to discuss on Thursday. My partner has the day off tomorrow so I wont feel isolated but I am going to have to draw on my inner strength to get through the rest of the week when I shall be, once again, alone and isolated. I do have a couple of close friends but no family left to lean on so the fight to stay sane will continue.

Thanks for reading.

[Fred]

Thanks for sharing Kate, don't worry you can lean on us.