While I was waiting in the dermatology clinic (it was over running by an at least an hour!) I got so bored that I started trying to “read” the other patients and how their skin might make them feel. I know that when my P is bad, I feel awkward, sore, embarrassed, I dread people seeing my skin and I sometimes feel I shrink inside myself.
I saw this for myself, some people were confident but most weren’t, more than a few checked their seat after they stood (I’ve been there!) A good few walked slowly into the room with their shoulders hunched, a lot of us itching surreptitiously.
Luckily I’m getting in there quick to start UVB treatment again ( fingers crossed) before my skin gets any worse, as none of my current topical treatments are working.
How do you cope emotionally when your skin is bad?
Does it hurt you? or do you shrug it off ?
I find myself apologizing alot.....for the ugliness, itching, flakes. It is painful...sore...especially on my scalp and "hidden" unmentionable places.
sigh Louise, this made me feel so sad. I’m one of the lucky ones, I guess: my psoriasis is pretty much invisible. I’m just itchitchitchy unless I am very careful about moisturizing. Of course, the fact that my psoriasis is virtually invisible (so slight that my doctor didn’t recognize it) also caused many years of delay in being diagnosed with PsA. The other side of the same coin, I guess.
Itching is bad, but when your skin looks awful as well as feels awful, it must take its psychological toll. I’m so sorry for people who have to suffer the added misery of visible psoriasis as well.
This has got me thinking about the young fellow I saw working in WalMart a few months ago. There he was, stocking shelves, his arms covered with plaques. He looked so so unhappy, poor kid. I debated with myself about whether I should have a chat with him and caution him about joint aches and pains. I decided that his day was probably bad enough already, without my “helpful” input. And yet afterwards, I wondered whether he would someday find himself suffering in ignorance of PsA, undiagnosed, making his lot in life even worse than it is now. I don’t know whether I did the right thing or not.
I spent about 38 years hiding my psoriasis. My kids were instructed never to tell anybody I had it. When it first showed up in my early 20s, it was all over my back, scalp, elbows and knees. Luckily we got my back to clear up right away. The other places were stubborn, and it took years before I found MG217 shampoo which was the only thing that could keep my scalp P under control. For a lot of years I'd use tanning beds in the spring to disguise the knee and elbow stuff, but over the last several years nothing worked. I religiously put the betamethasone cream on it twice a day and went for the UVB treatments for several months and it just kept getting worse, along with PsA.
I was so embarrassed about it--it was always covered up. People would ask me why I didn't wear shorts in 90+ F weather. I'd say, oh the heat doesn't bother me--buckets if sweat dripping off my face! Crazy. I only began telling people once I got on Enbrel. Now that I feel better and my skin looks better, it's not embarrassing to admit. I think with me, it was an insecurity about being thought of as not "normal".
Its very sad that P makes us feel so ashamed… ladies, I’ve been there, but as Grandma J found, when your skin improves, so does your confidence. When I know something works it makes a big shift in my head.
Hoping you get there Sunshine x
Bless you Seenie for showing your wisdom and understanding, in not approaching that lad.
I’m just waiting for the go ahead for UVB treatment, as there is some concern about having it while on MTX
Thanks for bringing it up Louise.....a tough topic but a good one to discuss and share :)
I think you were okay in not approaching him, Seenie. I know you would love to help and show him that you understand, but you never know when people are hoping nobody notices. Some people like the attention and don't mind that you noticed while others (like me) would be embarrassed. Hopefully, he'll get the right help if he gets PsA. :-(
Seenie said:
*sigh* Louise, this made me feel so sad. I'm one of the lucky ones, I guess: my psoriasis is pretty much invisible. I'm just itchitchitchy unless I am very careful about moisturizing. Of course, the fact that my psoriasis is virtually invisible (so slight that my doctor didn't recognize it) also caused many years of delay in being diagnosed with PsA. The other side of the same coin, I guess.
Itching is bad, but when your skin looks awful as well as feels awful, it must take its psychological toll. I'm so sorry for people who have to suffer the added misery of visible psoriasis as well.
This has got me thinking about the young fellow I saw working in WalMart a few months ago. There he was, stocking shelves, his arms covered with plaques. He looked so so unhappy, poor kid. I debated with myself about whether I should have a chat with him and caution him about joint aches and pains. I decided that his day was probably bad enough already, without my "helpful" input. And yet afterwards, I wondered whether he would someday find himself suffering in ignorance of PsA, undiagnosed, making his lot in life even worse than it is now. I don't know whether I did the right thing or not.
Well I’m really upset with the dermatology department. From the last 2 appointments I have been given the impression that I will be starting on another course of UVB treatment fairly soon, and was even swabbed for MRSA as a routine precaution pre treatment. So when I received the copy of the clinic letter which goes to my GP you can imagine my shock when I read the phrase “UVB treatment was discussed but unfortunately she is not a good candidate for this treatment”.
I will be honest I cried for most of the day, I couldn’t believe that not only had the decision not been discussed with me, but also that I would be treated in such an off hand manner. My P started when I was about 12 and just got steadily worse, I cannot go back to being covered by P. I am mad as hell, inconsolable, and want to punch the world in the face!
I’ve written a letter of complaint, but got my son to read it first to make sure it wasn’t too strong. My first instinct was to phone but I know only too well that they wont understand one word through all the snot and tears, its such an emotive issue for me I cant discuss it without tears.
One very p****d and let down woman 
Oh Louis I am so sorry. That is beyond frustrating! You’re not a child and shouldn’t be treated like one. Good to let it out but not let it take over you. I was so p*****d once at work my hands were swollen for second time I could hardly hold a screw driver in my hand . I kept dropping everything over and over crying no one was around I thought so I just started throwing them. Well one of my coworkers was nearby and I had to tell them what was going on. I had not told anyone at work too worried I would loose my job and be judged. A blubbering mess I managed to get them to keep my secret. Sometimes we just loose it very out of character for many of us but we all have limits. Hang in there maybe there is advice someone can give. I just wanted you to know it’s OK to go to pieces every now and then. Sending you hugs!
Thanks Rachael, I got the letter on Thursday and this is the first time I can write about it without crying lol…think I really needed to let it all out, but now I’ve had a few days of wallowing, so now got to be pro active and get some answers
Louise....my heart goes out to you! I agree with Rachel....we are so good at stuffing our emotions down that sometimes they just have to get out! I pray that you will find intelligent, compassionate care quickly!
Hugs!
Sandy
Oh Louise, what a heartwrenching situation.
Forgive me if I've forgotten other posts you've written (my brain and memory not on top form at the moment) but I guess this also means you're not seeing any improvement in your psoriasis from the mtx. Have you looked into how to get on a biologic via dermatology for the psoriasis? I have a friend with PsA who can't access it via rheumatology but was able to be treated with Humira for her skin disease .... it's made so much difference to both her skin and joints.
If there is anything I can ask my friend for you about the NHS dermatology treatment path just let me know.
That's how I got the Humira....thru my Derm...the P was out of control!
Ah thanks Jules, Unfortunately I've been left with no idea what my care plan is as it hasn't been discussed with me. I was completely clear of P after UBV treatment in Jan 2010, started mtx the following year. This treatment was the only thing that was effective on my P in 40 years. I have psoriasis vulgaris over the lower part of my back and buttocks and the back of my thighs, it's starting to hurt when I sit down and I presumed as the 2 derms I saw both talked in a positive way about more UVB treatment that was the plan.....obviously they had other ideas.
I have written a letter, which I will be hand delivering tomorrow, asking several pointed questions, so I guess it will be a case of watch this space.
Jules said:
Oh Louise, what a heartwrenching situation.
Forgive me if I've forgotten other posts you've written (my brain and memory not on top form at the moment) but I guess this also means you're not seeing any improvement in your psoriasis from the mtx. Have you looked into how to get on a biologic via dermatology for the psoriasis? I have a friend with PsA who can't access it via rheumatology but was able to be treated with Humira for her skin disease .... it's made so much difference to both her skin and joints.
If there is anything I can ask my friend for you about the NHS dermatology treatment path just let me know.
Sounds like a biologic is the next logical step for you ..... I hope your dermy is on the same page. Hang in there and I hope you get a speedy and positive response to your letter. Keep us posted.
A speedy response indeed!!!
I wrote the letter, but it languished in my handbag (purse) amongst the fluff and rubbish that spontaneously generates in ' the handbag ecosystem' for a while until I posted it last Thursday.....which meant the dermatology department probably didn't get it til this Monday. Tuesday lunchtime I received a call from the consultants secretary apologising for the way the letter came across, and assuring me it was due to a paragraph being left off the letter by the company that types up the clinic letters (?) Yes unfortunately the NHS does out source such things to outside companies!
I took the apology at face value, although it still shouldn't have been sent out if incorrect, and thanked the secretary for the call. I was then given my first UVB treatment on Wednesday, yes, the very next day! and now I'm due every Monday Wednesday and Friday for treatment. If that secretary had been in front of me instead of on the phone, I would have kissed her! really I would!
So it's fingers crossed my P will improve.
Oh, and the reason I left posting the letter?....... because I had poured my heart out about how their letter had made me feel, how living with P since I was 12 made me feel, how the threat of living in the dark again, hiding myself again made me feel.
It was very theraputic, and it obviously worked, although I might add the dermatology nurse was very frosty with me on Wednesday, but I put it down to her having a bad day, so we will see :)
The universe sometimes moves in mysterious ways so I firmly believe the temporary 'filing' in your handbag was meant to be .... as this week was the week that the planets were in the right alignment (blah, blah, blah) for the letter to arrive, be read by the right people and to get your treatment moving forward. And I am delighted for you :)
Thanks Jules 
Pretty pleased myself, and forgot to ask the length of the treatment! Last time it was 10 weeks, but think its likely to be shorter due to being on MTX, had to do a consent form etc.
I think some things are meant to be, as you say the universe moves in mysterious ways…it didn’t feel right to post it so I waited til it did
Yeah, I had a feeling there was something that didn’t add up in that letter. I’m so glad that you responded and let them know youreelings. I totally agree with Jules: sometimes you just have to take your time to do things when they feel right. And you got a great result. Fantastic! I hope those treatments work well for you.
My P isn't so bad. Honestly, it could be much worse. But, my face is bad. Rashes, P around the hairline and jawline, Rosacea, and lots of ingrown hairs. It's a mess. Sometimes I think if my face could look nice, I could handle the patches on my body during swim suit season.