to be so fucking hurt by them

[bumblebeesarecute]

I have hideous psoriasis. Im self conscious of it everyday- its like an outline of crusts all around my scalp. I can't hide it- it extends onto my face and neck- and my entire scalp is bright red with chunky white crusts on it.

I was having a massive flare up and I knew it looked awful. At work a customer pointed it out loudly and said it looked very sore. No shit, captain obvious. I ignored and tried not to show I was hurt.

But what upset me most is my friends/co-workers pointing it out and talking about it. They know I have a skin condition, they know it flares up, I dont know why they felt the need to point it out like this. They are the type who are blunt but actually just rude. They loudly said wtf is that on your head? I tried to hush it up and say its just psoriasis and its flared up and said I didnt want to talk about it. They made it obvious they were staring at it but scrunched up their faces in an eww way. They then kept talking about how "gross" it looked and asking silly things like can I catch it? is it an infection? (Whilst standing back from me in a joking way). I said no and that once again I didnt want to talk about it. But they kept at it and pointing out that some of the crusts had fallen out my hair and it looked like it was snowing on me. All while laughing and joking. Other colleagues then got involved and started preaching to me that their mom/dad/sister/cousin/labrador has dry skin and I NEED to use sudocrem. I told them that im under a dermatologist who is currently trying to shut down my immune system to stop this, and that sudocrem won't help, and as ive already said I dont want to discuss it. They kept at it, now at work im continually hit with questions like have you tried sudocrem yet? what about e45? have you thought about going to the doctors and asking for a steroid cream? have you tried going vegan? Well meaning but so fucking annoying especially as ive already said I down want to talk about it

I already knew it was bad so I dont know why this has hurt me so much but it really stung. I know they were just joking but I wanted to die on the spot and its confirmed what I already knew- that its obvious and fucking ugly. I just want to cry everyday now when I look in the mirror and im embarrassed at work, uni and everyday life now

I've got my graduation ball coming up and I just want to burst into tears thinking about it. I'm hideous, I look so ugly and its definitely noticeable. My friends and I have booked for a hairdresser to come and do our hair but its hit me that no matter what style I go for, it's going to be obvious and I can't hide it. I know I shouldn't have to but people judge and make comments and I just dont want to go anymore. But with covid this graduation ball is just about the only event we have had an Uni and whilst im so scared about going now and I know im going to look hideous, I feel so sad about not going. I've got other events too- birthday party, weddings, holidays with friends- I just feel so down and self conscious for it all now because this has confirmed what I already knew, that its obvious and really bad looking

I know nobody can really help me but does anyone have any advice on how to cope with this or has anyone experiences similar. Thanks x

Sending hugs. Uv light would be the way to go. My friend has the same as you, she's managing it well using a sun bed/uv light. You can't see it anymore. She tried every through the hospital, even steroids. Only the uv light works.

Hey 👋 I’m just here to say im
so so sorry that some people think it’s ok to treat others this way & you absolutely DONT and shouldn’t accept it! I know that doesn’t help in your daily life and unfortunately I’ve no advice and obviously I don’t know what I would do in you shoes but I wouldn’t let any f*ker stop me from celebrating something I’d worked sooooo hard for! Huge congratulations on ur graduation- go, enjoy it, fk everyone who looks at u twice (unless it’s to tell u how beautiful I are of course 🥰😘) and celebrate your individuality, I agree with pp about going to manager/HR and nobody goes to work to get bullied which is what is happening whether they agree or not- they are making you upset & continue to do so, I’m so so sorry your going through this, I hope your dermatologist gets ontop of this for you asap, I’m not certain but I’ve heard that stress can flare ur psoriasis up- try blocking these f*kers out (easier said than done I realise) and just focus on you, ur friends & family who love u for u and let those nasty people stay in their own wee horrible group! All the very best/ please go to your graduation- YOU TOTALLY DESERVE TO! And you’ll be raging with yourself if you don’t go- sending u love, hugs & best wishes 😘🥰🤗🥂🥂🥂🥰🥰🥰

Do you have any Muslim friends or neighbours who would have ideas for managing scarves?

Another psoriasis sufferer here, I get the joy of having psoriatic arthritis too!

It can make for a miserable existence.

I know it doesn't help but you have nothing to be ashamed or embarrassed about, and others peoples ignorance and prejudice is not your fault.

I hope you don't mind me asking but I cannot see you saying what you do take / do for the condition?

I am not going recommend tumeric / going vegan / sudocrem etc - it won't work! Have you discussed proper medication with your dermatologist? Methotrexate has really helped me. It's a bastard of a medication and I was put on it for my arthritis symptoms but it can be used on psoriasis only (it helped my arthritis and my psoriasis!). It may be an option.

There are medical options out there. In the meantime hold your head high!!!!

Psoriasis is a bitch and I feel for you, OP.

And your colleagues are crass and insensitive and your manager needs to have a word with them.

My heart goes out to you, OP. That's awful. And people suggesting things as if you'd just be sitting around struggling with it when the perfect solution was just a google away.

In your shoes I'd be trying to build up confidence eg by exercise, weightlifting, meditation, hobbies etc - so you can feel good about yourself and be a bit more protected against morons making thoughtless comments. You can't control what people do but you can control how you respond to it.

Your body is amazing and beautiful, even with psoriasis - it might not be perfect, but no body is and it's the only one you'll ever have. I know that sounds trite but if you're always hating on yourself, other people being mean or thoughtless will hit you harder too.

You mention uni so I wonder if you are on the younger side.

Your colleagues have been very unkind. Some young people do not have enough life experience and react to anything different from the herd badly and without thought for others.

Please try and remember that most people you will meet as you go about your life will be less judgmental and will know that this is beyond your control. They will probably admire your resilience.

My niece had a similar problem. When she finally saw a consultant he explained a lot of what GPS prescribe is very under strength. She is much better now.

you sound like an amazing person.

I have worked with children and young people who have chronic severe skin conditions that they cannot hide and whose treatment is painful, smelly, sticky and oily.

It is incredibly hard to cope with mentally because we are so image driven as a culture.

Different people seem to use different coping mechanisms long term, often supported by counselling and mental health support.

Some cover up and hide as much as possible, others use humour, others will challenge people who comment because they are being rude and hurtful.

It depends on personality/how you're feeling at the time/ what works for you.

People who are saying hurtful things are not your friends though.. friends don't do this - and if they are not usually twits then you need to let them know how crap this is making you feel - if they don't stop, they're not friends.

At work, you challenge this as a disability discrimination - this is bullying due to your chronic medical condition.

I dont know why this has hurt me so much

I know why it's hurt you so much. Your friends/coworkers are a bunch of nasty, insensitive shi*theads.

Your colleagues sound like absolutely awful bullies. Please speak to HR/your manager about their behaviour towards you.

My psoriasis is milder than yours but I live with another skin condition and am very familiar with unsolicited advice and unpleasant attitudes ("you can't swim, it's unfair on others to see you", that sort of thing).

None of this is your fault and you have as much right as anyone else to go about your day to day activities without being commented on, offered unsolicited advice and without being bullied. Please don't feel you have to hide yourself away.

I've had psoriasis for 50+ years to varying degrees, hospitalised at one point, completely clear for some weeks / months.

I've been using methotrexate for 17 years which helps but it's a Red book medication and needs careful monitoring, regular (6 weekly for me) blood tests. I've had psoriatic arthritis since 2007 and inject myself weekly (Enbrel, previously Humira until that stopped working) - both extremely expensive drugs (Humira in 2017 was £400 per injection - which I had every 2 weeks, on the NHS). I give this information to show that I do know what I'm talking about here.

But there isn't a cure - people saying "this works" or "that works", "it's diet", it's snake oil etc. It can go into remission, but there isn't a cure. If something works for one person there is no guarantees it will work for another. It can, however, be controlled.

@Bumblebeesarecute - I've been where you are - the continual comments about dandruff: when I coloured my hair the flakes came off on my clothes in the same colour and I had one colleague do a "comical" fake vomit gag looking at it. 30+ years ago and I still cringe at the memory. People can be cruel.

• Previous posters have said get HR involved. As one very good previous poster said, use your OP, print it out and hand it to your line manager and HR. There were some excellent points in their post.
• Think about printing out a small leaflet about psoriasis to hand to your colleagues when/if they start on you with a comment "information is your friend" and then ignore the fckers. Maybe ask HR if they are OK with you handing this out if they don't take action against the fckers quick enough.
• Get an appointment set up as soon as you can with your dermatologist and give them the same OP print out. There are things that the dermatologist can suggest but - and I'm probably going to provoke comment on here - it's time consuming for the dermatologist to get a new medication set up for you and it can be an expensive medication (see my note about Humira above) and staff (from my experience) won't recommend anything ££ until other avenues have been explored - I can't tell you how many tubes of dermovate / betnovate / dovobet, etc I've gone through over the years, which didn't touch the edges of my psoriasis. I had fabulous results from UVA / UVB treatments but it was incredibly difficult scheduling appointments and working/childcare. Had to go every couple of days for a few months = six glorious months p-free then it crept back. Salt baths were good for me at that time too. Dermatologist, do it today and don't hold back when you see them, tell them you are bloody miserable with it, and ask for a second opinion if you don't feel you're being taken seriously.

As for your prom, can you afford to do a bit of a shop around, a proper face-to-face with some local hairdressers to see what they can offer? Or call and ask to speak to the Manager, and explain the problem and see if they are sympathetic. One person in 30 has psoriasis, a good hairdresser will have come across it before. I was an extremely shy teen and had dreadful hair because I was so self-conscious. I wish I'd had someone point this out to me.

1. HR
2. Dermatologist
3. Good hairdresser

Good luck xx

I also have a serious autoimmune disorder, so I understand. but this comment was so interesting...I have a Muslim friend who looks so beautiful in her scarf, so much so that I asked her if she would mind telling me how she got it so perfect. It was rose pink. She laughed and said of course not, there was a trick to it, it was a cap, and the scarf was placed over and around it. She was pleased I had asked!

I work in the beauty industry.
I have psoriasis on my scalp, RA and an under active thyroid.
The only shampoo that clears the scalp flakes/ sores is Wella Senso Calm. Amazing. I tried prescription and TGel, no response.
My daughter has had eczema from birth. She uses Tamaru from Tropics on flairs. E45 doesn't touch her.
If you are in the UK your condition is covered by reasonable adjustments in the work place i.e being able to wear modified clothes etc.

I’d report your colleagues at work for bullying. It’s not on.
Other than that I’m sending you a hug.
I understand your pain.
My DF is and always has been covered in psoriasis. He never learned to swim as he couldn’t stand people staring and making comments. He never wore shorts either.
Nothing ever really helped it, even light treatment, but stress made it worse.

Totally feel your pain, i've had the same for years.
Finally saw a dermatologist & am now on immunosuppressants (following all sorts of topical, oral & light therapy) & they have worked wonders.

As others have said, if you have HR, speak to them. Explain your condition (if you feel you can) & the issues your colleagues create. Emphasise the fact they stress you out (often stress can make the condition worse).

Then continue persuing the dermatologist.

Hope you get some good results soon 🌺

Not read the whole thread. I have it and am in remission. At its worst I was on methotrexate and it sorted it. My friend has IVIG infusions, and a monoclonal antibody injection which has been miraculous.

Hope your consultant gets it sorted. It’s miserable. X

You arent alone OP and it’s awful. I can’t believe they were so rude!!

I know your not after solutions but wanted to add what’s helped for me:

• food intolerance testing, turns out I’m allergic to milk
• stress makes my flares up worse
• Tgel therapeutic shampoo
• probably not recommend but i quite like the feeling - using a nit comb helps pull out the scales in the scalp
• enstilar for body
• really good scalp gel that’s steroid (I shall see if I can find it)

Only things that have massively helped me is steroids, cutting out milk and trying to avoid stress (easier said than done!)

I echo what the others have said OP, everyone is an expert.

I've had psoriasis for 45 years, I've used every cream under the sun. I've had ultra violet treatments, been hospitalised and only recently have I had some relief. Finally prescribed tablets which have worked wonders. My GP doesn't have a clue and when I was at rock bottom he would not refer me to dermatology. I did persevere and another GP too one look at my body being completely covered and a got a referral. It took ages but I met with a wonderful doctor who gave a shit, and initially prescribed methotrexate, unfortunately I had lots of hair loss so she moved me on to apremilast which feels like a miracle. I'm not completely clear but so much better.

Definitely report them OP, this is awful treatment at your workplace.
People don't realise how difficult lifelong skin issues are, we don't need comments or advice.

It really affects all aspects of life.

Hey - can you tell me it’s about the injections please?

Humira, and efalizumab were the injections I was instructed about. Intravenous immunoglobulin is IVIG.

Etanercept and infliximab now I have found my notes. A few years ago though.

thank you! I have heard of enbrel. I’ve always refused methotrexate so even with private health care doubt they would let me have it

I did well on methotrexate. Cyclosporine was the other one mentioned but I think that’s more heavy duty.

Your colleagues are really being bullies, OP, so I'm backing up PPs who've suggested HR.

Many moons ago I had a vacation job in a factory on one of the roughest parts of the UK and there was a guy there with psoriasis on his face (dunno if it was a particular flare up for him or whether it was always at that level, but it was quite pronounced) and not one person ever mentioned it or took the piss.
There were people working in this factory who'd left school at 14 and some who had difficulty with literacy etc, I heard tales about scraps on works nights out etc - but no it seemed like everyone had the basic decency not to mock this guy. It comes down to kindness and decency and your colleagues are well out of order and possibly on the wrong side of employment law.

Go to your graduation ball.

They sound horrible. I had a rash on my face for a while and no one at work brought it up unless I did and they'd say what do you think caused it, it looks sore etc. concerned stuff.