News Today

[Sandra]

Hi all,
Just had a text from my brother, informing of an article in The Daily Express re: Young woman who has killed herself as a direct result of the depression and anxiety related to psoriasis. How awful and tragic for both her and her family.
My brother has been questioning me about how I feel, as he says he knows how bad my psoriasis is at present. Of course I have reassured him but it did make me think.
Not once has a g.p. or a consultant ever asked me how I feel, how is my daily life affected etc..
Actually it effects my daily life, my relationships, work etc.. greatly.
For example: at work they have a Hoover handy for me as I flake everywhere. After sitting in long meetings, I get up and look at the floor and it is covered in my skin so I get the Hoover and clean it. At the end of the day, I Hoover at Head Office as the cleaners staff are unhappy, doesn't matter that they know it isn't contagious and actually I am so self conscious I would do it anyway. When I go to clients homes, I can see them focusing on my hands and have to first explain that my condition is not contagious before I can support them!
I am lucky I have supportive family and a husband who is very understanding, because we no longer go for meals out anymore because I shed so much skin, I do not go with him to work functions anymore as the last time I did people were incredibly rude and one person actually said, I would stay home if I looked like that!
I look and feel revolting, it is revolting! I am in pain! I am exhausted. I am at times made to feel like I am a hypochondriac. I have psoriasis in places that are too embarrassing to discuss and am uncomfortable most of the time.
So, I have often said my psoriasis did not develop until later in life, I do not know how I would have coped if it had started when I was young.
I am at the hospital tomorrow to see the Consultant, and I will be impressing on them their own guidlines. I will be impressing upon them, the difficulties we all face in daily life. I will not be fobbed off with U.V. And heavy duty steroids any longer. I know Doctors are only human, I know they make mistakes and I am not in anyway implying they are useless, just that after 8yrs of seeing them, it is time they took seriously the impact of psoriasis on daily life.

Fred: hope I put this thread in the right place, apologies if not.

[jiml]

Hi Sandra and thank you for bringing the subject up.... Such a shame that it drives people towards suicide.... I can understand why, because unless you have been in the position of being in pain with the arthritic side and the constant being covered in scales, and being looked at as a freak.
How would you understand!
A lot of the medical profession tend to look at psoriasis as a skin problem and a bit of an annoyance...... But we know it's a chronic illness and the physical parts that we feel and others see are just the tip of the iceberg..... We all try to put on a brave face when we meet people, but inside we are generally suffering.
The psychological side effect of this disease is as bad or in some cases worse than the actual affliction. I have read on other sites and on here where people are feeling suicidal and at the end of their tether.
A few will find their way to various sites, some more supportive than others, I'm always glad when they come here because I think the fact that it is independent keeps people coming back and I think the support the club gives is always positive and helpful.

I hope you cite the article tomorrow when you go to see your consultant and I know you will be forceful and tell them what you need, my advice as always is be assertive and if that doesn't work break down and cry
I wish you much luck and wait to hear what the consultant offers, I'm hoping for good news so you can get on the road to recovery
Jim

[Fred]

Hello Sandra, yes it's in the right place, I posted one similar a while back Warning Very Sad!

It is always sad to hear these types of things, and it makes me feel very uncomfortable as I feel if these people would just come to Psoriasis Club and have chat with it's members they would find they are not alone.

It's good to hear your brother is questioning you about your feelings as it goes a long way, and of course you are self conscious about how you think it looks to others. I once thought of getting a magic marker and writing "I'm Not Contagious" on my head.

Re your g.p. and consultant never asking you how you feel, or how your daily life affected, they should be doing this. Give them the links to this: NICE Quality Standards for Psoriasis Also tell them they should be using the Dermatology Life Quality Index (DLQI)

It's a well known fact that a lot of people with psoriasis also will probably suffer with depression so any professional should know this and should be keeping an eye out, if their not then I would change your GP and/or consultant.

When you say "I am at the hospital tomorrow to see the Consultant, and I will be impressing on them their own guidelines. I will be impressing upon them, the difficulties we all face in daily life. I will not be fobbed off with U.V. And heavy duty steroids any longer." This is the way to go as it is your body they are playing with, tell them it's affecting your daily life and you want something better as your current treatment obviously isn't working.

Some threads you may be interested in reading:
Psoriasis Myths and History
Depression and psoriasis
Cohabitants of psoriasis patients have similar DLQI results
Is Psoriasis Contagious?
The Hidden Enemy


*If anyone is reading this and want to talk with others who understand, please come and join us. You will find a very friendly group of people always willing to talk, so never be alone with psoriasis.

[Sandra]

Hi Fred and Jim.
I have printed off the N.I.C.E. Guidlines (thank you Jim for pointing in the right direction) I will be taking them with me tomorrow. I have been seeing a new G.P. In the practice and he appears to be more up to date in his practice and treatment options.
I do believe up until now they have all looked at it as a skin issue and not anything to do with the immune system.
I cannot agree more, that the advice and support that this forum offers is second to none. The information it provides is huge and based on up to date research and fact. These last few months have been the most difficult that I have faced, the psoriasis has spread onto my arms, shoulders and back. On one particular night ( early hours of the morning) I reached out on this forum as I was literally at the end of my tether. Jim and others responded and got me through and gave me the confidence to go back to the G.p. the very next morning. Because of the advice given and seeing a new g.p. Who at least dealt with itch and finally figured out the infection, things are 40-50% improved.
I am determined that I will not be rushed tomorrow and I will be listened to.
I shall give you all an update tomorrow.
Sandra

[Kat]

Sandra, good luck tomorrow!

As to the article - Having support is the best medicine imo for the mental dealings of psoriasis, it is why I am so very glad I found this forum. I am very thankful that I did not have to deal with psoriasis during my teen years. I know many here have had the diagnosis since childhood and I really cannot imagine how tough that would have been. It's not easy to deal with psoriasis at any point in life but having support from people who understand really makes you realize that you are not alone.

[Sandra]

Thank you Kat.
I agree peer support is so important and yet, again, no G.p. Or consultant has even suggested any support groups. You are very much left to find these groups yourself.
Sandra

[jiml]

Thank you Kat.
I agree peer support is so important and yet, again, no G.p. Or consultant has even suggested any support groups. You are very much left to find these groups yourself.
Sandra

I asked at my hospital could I put a club poster in the waiting area, they said leave it with them and they would see if they were allowed to put it up... I was there last week and the poster was nowhere to be seen
I do leave a couple of cards on the reading material tables in dermatology and they seem to disappear I hope they aren't binned and that patients are taking them away with them

[Kat]

Thank you Kat.
I agree peer support is so important and yet, again, no G.p. Or consultant has even suggested any support groups. You are very much left to find these groups yourself.
Sandra

You are so very right Sandra. My GP is very good in that he takes time to talk to you during a visit. His number one thing is that doctor's need to really listen to patients and his visits are never rushed but even he has never discussed the mental aspects of having psoriasis.

[Fred]

I asked at my hospital could I put a club poster in the waiting area, they said leave it with them and they would see if they were allowed to put it up... I was there last week and the poster was nowhere to be seen
I do leave a couple of cards on the reading material tables in dermatology and they seem to disappear I hope they aren't binned and that patients are taking them away with them

My hospital used to let me put them up too, but they too have removed them. I suppose to be fair if they let one do it, they would then get more asking and it would end up with the waiting room looking like a newsagents window.

A bit like we don't allow promotion here, it keeps it all nice and relaxed and unbiased.

[slm]

Hi Sandra. I hope your appointment goes well. I know how revolting it all is and how the shedding is such an embarrassment. It is hard to keep positive when you feel this way. I will look forward hearing your next on treatment.