To say some people don’t understand how bad psoriasis and eczema is?

[DanceBecauseYouCan]

Fully prepared to be told I’m being unreasonable (and I genuinely mean that!) I’m having a particularly nasty psoriasis flare up on my head right now and I’m in a bad mood because of it so maybe I’m just being unreasonable but I just wanted to get this off my chest.

I feel like not everyone understands how bad psoriasis (and eczema) can be. I’ve noticed a lot of people saying they have eczema or psoriasis when they just have a bit of dry skin, and I think most people consider the conditions to just be dry or slightly irritated skin when actually it’s awful (I know it’s a spectrum and some people have it worse than others, but not every bit of dry skin is a condition, sometimes it’s just normal). I don’t have eczema so can’t talk about that but psoriasis is an autoimmune condition and not just a reaction to soap or shampoo like some people seem to think.

I don’t talk about it or bring it up but it’s obvious and red raw at times so sometimes it does come up in conversation. The number of people that are like ‘’omg I have horrific psoriasis too, have you tried a product called t gel or Sudocream? Make sure you moisturise everyday!!!’’

I know people are trying to be helpful and sometimes simple OTC products do help, but it’s a bit frustrating after a while to have people claiming their tiny bit of dry skin is psoriasis or eczema when actually it’s just typical dry skin that’s completely normal. Im on very strong topical steroids and am under dermatology, I think it’s a bit beyond e45 and I know by now that I need to moisturise everyday!

I guess a similar comparison is probably people with ME or chronic fatigue syndrome- i have a friend with this who gets so frustrated with people telling her they have it too because they’re always so tired and reminding her of the importance to get at least 8 hours of sleep 🙄 I guess it’s sort of like that!

I know I have no way of knowing if their dry skin is just them on a good day and I’m probably not explaining this well, but does anyone else with psoriasis (or eczema) feel like this?

I read an article in the Spring about Tamanu oil and a man who had developed a cream for his daughter’s eczema which had helped her skin to heal. So I bought some the oil and mixed it at 25% with sunflower oil and it helped a bit as in some of the redness went down but she was still scratching herself raw. So then her mum mixed it at 50% with the sunflower oil and it hasn’t been overnight, or miraculous, but here we are three months later and you can still see the discolourations behind her knees and in her elbows, but the skin has healed. We got a little brown bottle from Neals Yard with a dropper and we put it on twice a day to keep it at bay. She hasn’t had to use the steroid cream since we started the oil and her skin is not so fragile looking.
Just thought I’d share as it might help someone with eczema. Don’t know if it would help psoriasis as that’s auto immune. Probs wouldn’t hurt to try though.

YANBU, I don't think most people understand how painful skin conditions can be. And people (including doctors) telling me I need to moisturise - oh wow, I completely did not know that after 40 YEARS!

I hear you. My psoriasis can flare up anytime and people say "have you tried this moisturizer?". No because it won't touch it, it's an auto immune disease. I appreciate people are just trying to help though but I want to shout shut up you don't understand! I've been hiding my legs all summer 😭

I think with any chronic issue people try and be helpful with no clue that actually you’ve tried all those options and hundreds more.

I get migraines and used to have terrible eczema flare ups (thankfully mostly resolved now) and the amount of times I’ve heard ‘have you tried just not scratching’ or ‘ibuprofen is good’ or even ‘I’ve got a migraine too’ as they scroll their phone just doesn’t bear thinking about. It really makes me cross.

I was lucky to grow out my childhood eczema but I'll never forget the relentless itching, the skin in my joints all crusting and sticking together and the looks of disgust because it was all around my ears and down my neck. My hair all sticking to the weeping sores.

As an adult I have psoriasis. My scalp is a nightmare, the itching and constant flakes are embarrassing. I used to go in to the local dermatology dept for treatments. The smell was horrific and I couldn't leave the house for a day after. My shins and lower legs are covered in patches at the moment. I have one particular patch that has become infected and I'm taking antibiotics for it as well as the usual creams etc... so, when people just suggest changing my washing powder or using T-gel I want to scream. But, I smile politely and say I have medicated stuff from the GP because they just don't get it.

I'm fortunate that my mobility isn't impacted and my biggest issue is discomfort and embarrassment.

I completely agree. I too am guilty of not understanding until my husband developed such severe eczema 18 months ago that he was suicidal. Luckily a determined GP threw everything she had at it and managed to get it under control. It's now a constant job of maintaining it. It really has been life changing and I don't think people get it

I'm on holiday with DPs family atm. Not one of them can understand why I'm wearing full length linen pants, long sleeve shirt and my hair completely pinned up to cover my scalp as thickly as possible.
'you must be sweltering!'
'it can't be that bad!'

'I'm sure the sun will do it good!'

My favorite ate the ‘dont scratch’ people!! Sometimes you just have to 🥲

I have psoriasis, nearly 40 years now and it never clears from my scalp. People say Tgel clears it but it just calms it down for me. I’ve never had people give me advice about it and but I do think if you can bear it, please don’t worry about it and don’t cover it up. I stopped caring after having to get changed for PE with it all over my back as a teenager in school. When it’s sore I get it, mine can feel like a burn if the patches grow but I don’t care about people looking - the only thing that truly helps for me is if I don’t cover it up. DC1 has just developed it and I want them to be positive about it and for it not to ruin their self esteem.

@Onlyhuman123

I'm so sorry for you. You've just described my lovely SiL...she's covered head to toe. Has massive plaques of scales on her back, always covers up no matter how hot, has max'd out her PUVA treatments for life and her only option now is methotrexate. She can't bring herself to take it because of the awful side effects. Her bathing routine takes 90 minutes most days, slathering on whatever ointment helps.

Thank you x please tell her it's worth a try. The effects for me haven't been bad. I feel nauseous for 24 hrs after taking it and tired, I eat lots of carbs and sleep. My hair does come out a bit more but it's not noticeable to anyone but me when I'm washing it. I now take methotrexate on Saturday night before bed which means I sleep any side effects off and have a lay in on Sunday. The rest of the week is totally fine and the difference it's made to my skin is amazing. In the first 12 weeks of taking it I was totally psoriasis free for the first time in my life. It's only flaring up now because I've not been taking it consistently during the pandemic.

I really hope she's talks to someone about it at least, it's worth the risk in my opinion.

I get it. Chronic urticaria for me
The amount of people that say "have you tried an antihistamine?"
Nope. Never thought of it dermatology didn't suggest it... I mean really

Now on a biologic injection which seems to have kicked it for now

@balalake I saw the late Dennis Potter in a restaurant about ten years before his death. Something I will never forget was his skin condition.

That's what I looked like in 1997 on a holiday in York 😩 after my first go of a treatment called pUVA. It was horrendous and resulted in a 12 week hospital stay.

Methotrexate certainly helped me. Stomach pain can be an issue sometimes, but the amount it has helped is worth it for me.

Maybe they have it in places covered by their clothes...?

Helpful, really. NOT! Expect people to walk around naked?!

Just shows the ignorance, really....

I have psoriasis. The sort they call "mild to moderate" so nothing like some of you are living with. My very elderly Dad has it, and is always apologising that I got "his skin". I've had all the treatments available to someone with a "mild to moderate" level of disease, and only sunlight or hospital light treatment ever makes a (temporary) difference. And that comes with its own risks.

Even at this low level it has life-changing effects. I never wear short sleeves or shorts unless I'm at home with my DH. It takes huge courage to put on a swimming costume. I think about it every day. It's always, always with you.

If I do cover up, and when my hands are clear in the summer ... most people wouldn't even know. But I can't remember a time when I didn't know, or a day when it didn't matter. And listening to you guys, I'm one of the luckier ones.

I have been diagnosed with PRP.

Just have a google to see how people suffer from having a disease of the skin.

Pityriasis rubra pilaris (PRP)

My problem was mild growing up. When it first got bad, I was googling as one does. I came across a newspaper story about a woman who had quit her job and liquidated her retirement savings to move and participate in a trial for one of the new biologics. Her symptoms sounded exactly like mine. She seemed completely rational to me.

I actually ended up on that drug as soon as it was approved for release. By that point we had exhausted steroids and immunosuppressants and I wasn’t a candidate for light therapy.

T gel is the E45 of scalp psoriasis😅

I think people don't understand the time it takes up either. I'm about to spend 20 minutes applying Sebco and steroids, then I get up an hour early to let the fucking T gel soak for 10 minutes before washing and drying my hair. On an endless loop because this flare up won't calm down but it's another £200 to see the consultant again or an 18 month wait on the NHS.

Eczema here, much reduced as I've grown up but as a kid I was 90% eczema and an inpatient. Having to be tarred and bandaged before bed or being prescribed tranquillisers to knock me into a deep enough sleep so I didn't claw myself to pieces. Constant infections, not being able to bend joints without cracking and bleeding.
I get flares now and adults in the workplace won't sit next to me ("oh alternating has monkeypox") that sort of thing.
It's really fucking shit, no child's farm doesn't work, no I can't put aveeno near my skin because I have mad allergic reactions to it.
Yes I have tried no eggs, dairy, sun, more sleep, less sleep..........
Love to anyone going through it at the moment, hope you manage to find some relief.

My 15 year old son has eczema has done for years it’s been particularly bad on his neck for over a year, red inflamed and broken skin. Our GP refuses to see him face to face so we just keep getting a different prescription for a different eczema cream and nothing helps.

I've had chronic eczema since I was 6 months old. I couldn't go to school at times as I couldn't bend my legs/arms etc. My parents spent a fortune trying to find a solution, including Chinese herbal medicine, light therapy etc.

The straw that broke the camel'a back was two years ago, I was signed off work for two weeks, I couldn't wear clothes as I was covered, weeping sores, the itching kept me up at night, I was averaging about two hours sleep. Looking back it was probably TSW, I've been on steroid cream pretty much all my life, to the point that the strongest GP and hospital would prescribe did fuck all. I have tried every single cream/pill/miracle cure. I've spent tens of thousands over the years trying to find something that works. Guess what, nothing did.

I did a lot of research, out of desperation, and came across the Aron Regimen. Booked an appt, got my first batch of cream, fully expecting it to be another disappointment. Two weeks in, my skin was clear. Two years on, I have maybe a tiny flare up (and when I say tiny, I mean a little patch maybe on my hand or in the crook of my arm).

It's expensive initially, but my god, it's actually saved my life!!! Worth every penny.

Had it as a child, it eased off a bit after puberty kicked in, then peri menopause hits and I was itching all over, getting a horrendous rash all over my body, my head felt like I had nits, I couldn’t sleep, and I had permanent red saw patches all over my body. After getting tested for every possible allergy (none I didn’t really know about already) I was finally referred to specialists who put me on dupixent. 9 months in I am almost back to normal, my skin feels soft again all my red patches and rashes have gone, I can even wear my jewellery again, I barely use steroid cream and only moisturise with a Reno. Absolute game changer and worth any side effects (which have been minimal so far and temporary). If there’s any long term implications I will take it, it’s worth it to feel better again.

Eczema here
in the face - around the eyes and mouth
when it’s bad my eyelids start bleeding - one year was big patches round the eyes, yes crust and blood
its pretty obvious when it’s bad
also get the “have you tried E45?” - I know you’re trying to help! But I have a small backpack full of creams just to get me through the day!!! Don’t advice, just offer sympathy and maybe a biscuit…
I feel your pain
I know people that get, bad as well and they never recommend creams unless I ask first - they know!

Moisturise with Aveeno

Reading this with my limbs wrapped in cling film. I get it OP, it’s really awful 💐