impact of psoriasis on self-image

[Nicky87]

Hi everyone,

I hope you don't mind me posting here.

I am a student nurse based in Dermatology at York hospital, UK and I am looking into psoriasis and the affect it has on peoples self-image and what support is available for this.

I have looked locally around the York area and have found there to be very little support for people with psoriasis outside of the health service, and I am trying to work out why this is the case.

If any of you would be able to answer a few questions which I can use in my research I would be really grateful. I don't need any personal information from you at all, just an overview of you and your condition.

If you have the time, please can I ask you to answer the questions below:

- How long have you had psoriasis?

- Do you feel that it affects your self-image?

- If so, in what ways?

- Do you receive any support for how you feel about your self image?

- If so, what support do you receive?

- If you do not receive support

- are you aware of support groups available to you? Do you access these at all? (e.g online discussion forums, local support groups)

- Do you feel that a support group is something which you would be interested in?

- If so, what kind of support would you prefer - online/face to face support?

- Why would you prefer this form of support?

Many thanks in advance,

Nicky - Student Nurse

[Butterfly65]

Hi Nicky87

Will be glad to help.

I've had plaque psoriasis for over 27 years, it emerged a few months after having my first child.

I would be lying if I said it didn't affect my self image because it does! When I get dressed up in a nice outfit when going somewhere special & see that my elbows / arms/ legs or hands & sometimes small patches on my face are either bright red or covered in thick white plaques I feel very self conscious & it can be a real downer for me. It makes me feel grotty & has affected my self esteem badly,especially when I was a young mother in my 20's, but as i've gotten older I've learned to care much less than i did when I was younger. I hated & resented the fact that I had this visible disease that had no cure & made me, at times feel like a leper.

I don't go swimming in public baths & tend to cover up my skin in summer with sheer cardigans & maxi skirts.( I often wonder why public baths don't have special sessions for people with skin related issues) . I've never received any kind of support from my Gp or from anywhere else for my self image & find that most Gp's are clueless about how to broach this subject. I do follow other psoriasis sufferers on social media accounts for hints & tips on how they cope & diet related articles & I prefer this type of support.

I don't like using prescription creams or lotions because they've never really worked for me & they're usually very greasy & contain harmful ingredients that in my opinion can do long term damage if used continuously, I've also ruined loads of clothes & bedding by using them.

I've never been prescribed any oral medication for my psoriasis & I don't think I'd consider taking any unless my psoriasis was bad enough to warrant its use because of the negative side effects.

I've had puva treatment once when I was in my 20's, it cleared my skin completely but the psoriasis returned after a few months of remission.

In my 40's I decided to use sunbeds in the spring to clear my skin for summer, I only used them for four months of each year & only had 6min sessions every other day.

Those years were great because I could dispense with my 3 x daily cream / lotion skin routine & my skin was completely clear of psoriasis. I was tanned, felt normal & best of all I could wear what I wanted & go swimming without worrying about my skin.

However, those years did come at a price because 4 years ago a small spot appeared on my forearm, I thought nothing of it & thought it was the start of a psoriasis patch but it grew rapidly & within two weeks I was concerned enough to go see my Gp.

My Gp told me she thought it was a type of skin cancer & I was urgently referred to see a dermatologist, I had squamous cell carcinoma (caused by sun bed use) & it was removed 6 weeks after it showed up & had grown to the size of a 2 pence piece so I now have a scar & deep dent left on my forearm because the surgeon had to dig deep to get it all out. As many other psoriasis sufferers will know, if you cut yourself or have a scar, psoriasis can flare at the sight, its known as 'koebners phenomenon'. I no longer use sunbeds & luckily psoriasis only affects about 20% of my body at the moment.

I've been experimenting with my diet for several months & have cut out various food types that are recommended by the late Dr Pagano ' in his book 'healing Psoriasis', it's very similar to the paleo diet & is focused on healing the gut, body & mind.

I've learned there's no quick fix for any type of Auto immune disease & it's an ongoing process of trying different methods to try to regain our health & wellbeing & fight the inflammation. Hope this helps with your research.

[Daisyharper]

Hi Nicky

I have had psoriasis for about 8 years

Not a great deal of support I am afrai my Rhemy doesn't seem to have a great deal of sympathy , I have just started on Neoral after having had 3 separate sessions of light therapy and Dobovet, I have had joined a couple of of support groups online but I think they are based in the USA, Iwould like a UK based group. If one was as good as the PMR support group I would be very happy as I have had PMR fro 2.5 years, and at the moment am down to 7mg a day, in fact my MPR is doing ok my Psorisis is much worse. I think online support is better as you n look at it any time.

Hope this helps

[healthygenes]

Hi Nicky I have had psoriasis for over 40 yrs, developed it having my second child just a little bit on my instep,then went away after he was born then again about 25 yrs later no reason just apeared under my foot,it only affects me if I have to take my shoes of or on holiday, I don't wear open shoes or sandals at all, the doctor has given me creams etc over the years,but unless I ask him or mention it he dosent,he never asks how I am or how my psoriasis is,since I have been on methatrexate it's worse,it's travelled all over the sole of my feet, it would be nice to have something on line just some kind of advice on the newest stuff out or if someone has tried a remedy that works etc,I'm one of the lucky ones it dosent impact on my life to much.best of luck with your research.

[BonnieSue]

Hello Nicky,

I have psoriasis mostly in my scalp but sometimes in my eyebrows and on my face. I had a break from it for a year or so but now it's returning bit by bit. I use a coal tar shampoo to keep it under control. I follow that with a nice scented shampoo in order not to have the awful scent of the coal tar shampoo in my hair. I then use Desonide cream on any remaining pink spots of psoriasis in my scalp or on my face. That clears it all up for me so I am not embarrassed to go around other people. I forget about the psoriasis once I'm done with applying any Desonide.

I've had psoriasis for about 40 years but didn't know what it was for most of those years, just knew I itched on my scalp and sometimes had flakes or bleeding. I didn't have facial/scalp-near-the-face outbreaks until late in life where I already had a Rheumy Dr. to consult with and identify the outbreaks as psoriasis and treat them with the Desonide cream.

I don't feel it affects my self image unless I'm overdue for a shampoo and my psoriasis isn't under control. And that is something that I CAN control and resolve on my own. I feel icky and dirty until I can get my hair and scalp shampooed and treated. I don't receive any support, it's a personal decision and I don't look to anyone else to make this happen for me. I don't need a support group. I am blessed that I don't have plaque psoriasis. I have different issues such as losing a spouse for which I will be going to a Hospice support group starting in July.

[Hidden]

Hi Nicky, what an interesting post!

I've had psoriasis for about 35 years. Initially it was 'just' inverse psoriasis that really didn't bother me too much, though it was absolutely constant for about 10 years. Then one day it just plain went, and stayed gone, for about 20 years apart from tiny patches. Then I got PsA which was eventually diagnosed 4 years ago.

Last year I started getting much more extensive psoriasis, it was everywhere apart from the back of my hands, neck and face. At the same time I started getting bald patches, the largest of which was nearly twice the diameter of a coffee mug, right on the top of my head. It presented 'atypically' apparently and so initially it was thought that I might have psoriasis plus alopecia areata plus a fungal infection and even possibly skin cancer.

In the end my rheumatologist came up with the idea that the flare might all be psoriasis and that it was very likely caused by stopping Mtx (I'm also on Humira). The time scale did fit. I re-started Mtx and at the point at which Mtx normally kicks in i.e. after about 6 weeks, the psoriasis started to subside very quickly and has now all but disappeared and my hair has completely grown back.

I know you didn't ask about the cause or triggers but I thought you might find this Mtx / psoriasis connection interesting. I don't know how common it is for cessation of a drug (maybe particularly one that can control psoriasis) to trigger such a dramatic flare but my dermatologist didn't join the dots.

Over the years I've seen people with severe psoriasis and thought that it doesn't really look too bad, that it doesn't really detract from the way a person comes across. However having it myself was quite different. There's that phrase 'feeling comfortable in your own skin' and that started ringing in my ears because I didn't, I didn't at all. The rash isn't only itchy, it gets uncomfortably hot and the constant flaking really gets to you. Being partially bald was hideous. And yet, while my PsA is under control now, I have experienced having to walk with a stick and even, at times, not being able to walk at all as well as severe pain. But the skin disease was even more all-encompassing. I think I could have handled the appearance of it were it not for the constant unpleasant sensations that make it so hard to ignore.

I saw a few dermatologists at the clinic I go to and treatment seemed a bit haphazard and chaotic. Eventually I realised I had to bite the bullet and tell them that I wasn't coping emotionally. One woman was dismissive. As I'd feared, she seemed to think I was neurotic. I stuck to my guns, emphasised that I was level-headed and kept trying to present the degree of emotional distress objectively, as just another symptom. The dermatologist I saw most often did listen and I felt that she kind of upped her game. Steroids weren't helping but she did re-think the management routine and explain it to me very clearly.

To my surprise my rheumatologist took the psoriasis flare very seriously. In fact, whenever I started to downplay the symptoms he'd remind me that it was a serious matter. That really helped me. Apart from that, my husband was a wonderful source of support.

The flare lasted about 7 months and I didn't get around to thinking about support groups. But if this ever happens again, which of course it might, I think I'd prefer face to face support and to actually compare the products and treatments we used. Treatment and management of psoriasis is pretty crazy - I think I was prescribed 20 or more different sprays, creams, lotions etc. last year and then of course there were the complementary options you read about online - there must be hundreds of those!

[thestonequo]

Hello Nicky, interesting request...

- How long have you had psoriasis?

I was diagnosed with Plaque and Guttae Psoriasis in 1990.

- Do you feel that it affects your self-image?

Yes.

- If so, in what ways?

I rarely take my shirt off in public or wear shorts. I feel it is awful to look at and won't look in a mirror at its worst. It affects relationships in that intimacy is awkward if you hate the way you look. Taking the kids swimming is a no no and I wear a tee shirt and make excuses not to go in the water. Won't shower in communal leisure centres. The list goes on

- Do you receive any support for how you feel about your self image?

Yes

- If so, what support do you receive?

I attend monthly sessions with a Physiotherapist and Stress Councillor.

My family and friends are extremely supportive.

My Dermatitas consultant at Hospital was good and helpful . Treatment was successful for major flare ups.

This on line site is helpful

- If you do not receive support

I declined group therapy. It depressed me.

- are you aware of support groups available to you? Do you access these at all? (e.g online discussion forums, local support groups)

Yes.

I think so.

- Do you feel that a support group is something which you would be interested in?

I believe i'm doing all I can

- If so, what kind of support would you prefer - online/face to face support?

N/A

- Why would you prefer this form of support?

N/A

Regards Jon

[Rennixon]

Hi Nicky

I'm a 50 year old female & have had psoriasis since I was 18 & it affects my joints. In the early years I was very conscious of the dry scaly skin & it did get me down. I felt very isolated, like no one understood. Probably the low point was in my 20's when walking in town at lunch time, two young lads joked that I "must have been on my knees a lot the night before" & "how luck my boyfriend must be".- a cheap shot, which at the time shocked & annoyed me, but it had the effect that I covered my legs from there on.

At 25 I got married, in the autumn & wore a long sleeved dress!

I do not go swimming( only a brief period when my kids were young) it's not worth the discusting looks you get.

I have felt very depressed at times & this feeling gets worse has your skin worsens, and you decent into a terrible downward spiral. It has taken years to accept it & to try & not let it affect you ( it does though)

Most people look at you with sympathy, some people ask downright personal questions. I've been asked if I'd been fighting, if I'd burnt myself & of course "is it catching". People's reactions range from grimaces & surprise to sucking on their teeth and my least favourite disgust!

It's affected how I dress - even down to underwater, what I can do with my hair & what (if any) make up I can use and what shoes I put on.

In short it has affected all aspects of my life.

There is no support for how you feel. This forum is the closest I've been to anyone understanding the psoriatic me.

Professionals should point the way to this forum, especially newbies as they can ask the questions they want to ask but feel unable to when face to face with a physician.

If they want to support people locally, they should not dictate(ie give talks about why & how)

I've been to a supposed support meeting years ago, & all I got was leaflets a lesson from a Red Cross woman who wanted us to cover ourselves in some awful, heavy makeup ( which in itself was an insult) & told there's no hope! The trouble is physicians can only talk in medical terms, people without this training are looking for simple answers to questions. There are many things to try & it's very important to keep going - trial & error are your friends & then hopefully something will work for you, there should be no promises made just encouragement to keep trying.

People should also be told that this is an autoimmune desease & what the consequences of this are.

Blood test should be explained in full! , not just / they are ok/ that's a little high etc. The more informed people are the better able they are to cope.

Women should be told there are many other conective tissue diseases that can affect them too. ( sorry can't speak for the men).

I have had puva baths, light treatment, various tablets including methotrexate, steroid creams & the dreaded tar. I've ruined clothes & bed linen through use of creams.

I've tried herbal medicine( waste of money) & been on a dairy free diet ( just made me loose far too much weight & look like death warmed up).

I do not use any prescribed creams or medication now. I stopped a few years ago & now use natural products which strangely enough I found a flyer for in a hospital waiting room.

I now don't really try to hide it anymore. I wear short sleeves & put shorts on in the summer. But this is because I'm 50 , have seen it all & had it all said to me.

Some irritations

No it's not eczema.

no I don't want to hear about your friends dad's cousin who tried this thing and it worked.

Please don't ask if I've tried this product or that diet.

No there is no cure.

No makeup won't cover it .

No I don't want to use a sun bed ( are you crazy ... Skin cancer people!!)

Trust me I'm a beautician (ha ha ha!)

Some of my reactions

No it's leprosy

Yes you should see the other woman

Good for them

Hello I can see you & hear you

Thanks for the advise, I'll look into it

Yes I've tried it but unfortunately it doesn't work

It's an autoimmune disease

Are you an expert

P s o r i a s i s

The P is silent!!

Nicky I know this sounds negative, but you need to be prepared for this reaction. the most positive thing I can say to you is that the hospital nurses in this department are some of the nicest and friendliest people I've met, they are never judgmental and always willing to listen.

I wish you the best of luck.

Linda

[Rosedail in reply to Rennixon]

I've had psoriasis for 43 years and I just had to laugh in empathy at your words

[pmb123]

Hi Nicky, I have had palmer plantar hands and feet psoriasis for 1 year now. It started after my blood counts dropped dangerously low while taking Methotrexate for about 3 years. I really feel that there is a connection between stopping the Methotrexate and my psoriasis. You see, I was on the Methotrexate for joint pain only, I did not have psoriasis. I felt like I was 88 years old. The Methotrexate kept me in check and I was doing great until my blood counts drops and I got a serious pneumomia. About 1 month after I stopped the Methotrexate I got the terrible cracking and peeling on my hands and feet. I then went to a dermatologist that prescribed Enbrel. I had a reaction to this drug after the second shot and then besided my feet and hands I was covered in every place ( my lady parts included) with plaque psoriasis. The dermatologist didn't seem to be sympathetic really. He wanted to switch me to Humaria. I didn't want to try another biological because now I was covered every where, could not walk or use my hands, had people stare and shun away from me. Even my own grandchildren. I even had to get a note from my dermatologist because the superintendant of our school district paid me a visit in my kitchen (I am a school cook in and elementary school) because a parent had been scared that I had mersa and complained. So yes I was feeling so depressed that when I went in for my following appointment with yet another associate of the dermatology clinic and she looked me in the eye and asked me with a smile , " So how are you feeling?" I looked her back straight in the eye and replied, " Hopeless and suicidal!" She immediately went to get the main Doctor. They came back in and for the first time seriously looked and me and sympathized that I might be at the end of my rope! So they decided to put me on Stelera shots. I am due to take my third shot in a month. My hands and feet are still terrible. The plaque psoriasis all over my body has cleared up 90% since they took my off Embrel. I have gained 30 pounds in 4 months from depression. I am still feeling hopeless. They really don't seem to care about self esteem and they really should. It is so depressing to hurt all the time and feel and look like a monster or zombie with your skin falling off and the looks of horror on cashiers faces when you hand them money and they have to hand you back the change. You feel the need to just hide away like the hunchback of Notradame... I'm sorry that this is so long Nicky, but thank you for being the only one that has asked how I am doing emotionally. I guess you just opened the flood gate. You will make a wonderful caring nurse! I would appreciate any support at all whether it be face to face or online. Thank you for asking.....

[Nicky87]

Thank you all so much for your responses. I am overwhelmed with how open and honest you have all been with me, which has really given me a true insight into how it really feels for you living with psoriasis and the impact this has on your lives. It also shows me that online support such as these forums are the only real support you have in a lot of cases, which to me shows a real lack of structured support for you. I know some of you do not wish to attend face to face classes as they are not helpful for you, but I feel that there are still limited options.

I am using this information to put a portfolio together on available support and proposing whether current networks are sufficient.

Your input has been invaluable to me and has really benefited my learning and development as a student nurse, and I hope that it will help me to understand the health and well being needs that all of my patients have when I qualify.

Thank you all again.

Nicky.

[TessHardy]

Hi - not sure if you have all the people you need for your research but I am happy to help if you need.

Sue

[jax553]

Hi, Nicki87, I do, I am conscious of everything If I look one way in this dress. and look another like something else dress, I am confused.