People who claim to have eczema or psoriasis

[wishfulthoughts3]

…. Who have self diagnosed it and actually simply have slightly dry or irritated skin??

i have psoriasis. My skin is continually sore and crusty. I’m under dermatology and am on a cocktail of treatments but it’s not even close to under control. I’ve had time off work, in hospital and I’ve spent hours crying in my room about my skin, both the pain of it and also how embarrassing it looks. People think it’s just a bit of dry skin and dandruff but it’s not at all like that. It’s agonising and debilitating not to mention embarrassing too.

and as well as the debilitating skin problems, psoriasis also attacks the joints which not many people know about. I’m in my 20s and there are times I can’t even walk because my knees are so riddled with psoriatic arthritis.

its an insidious disease which not many people realise is this bad.

so many people claim to have psoriasis or eczema when they simply have dry skin, and usually they then say things like ‘have you tried sudocrem??? Or have you tried using moisturiser??’ Nah, I didn’t try that, I skipped straight to the immunosuppressive drugs. it’s so patronising and slightly insulting- I have other health conditions and nobody has ever tried to recommend treatments as much as people do with psoriasis and eczema. It’s as if because it’s visible it’s a fair game for people to give unwanted and frankly useless suggestions. You wouldn’t catch most people self diagnosing with other conditions like they do work psoriasis and eczema

I don’t think people fully understand what it is. Psoriasis is an autoimmune condition. Yes, some people will have it milder than others. But it’s slightly insulting when people just casually self diagnosis the slightest bit of dry skin as psoriasis. I don’t have eczema so I have no personal experience of it but I imagine it’s the same with people incorrectly saying they have it and suggesting miracle cures for it.

maybe I’m just a bit grumpy tonight (happy to accept I am) because I’m in pain and miserable, but just wondering, does anyone else with psoriasis or eczema feel the way I do?

I have an autoimmune condition and agree some people make idiotic suggestions. It drives me up the wall and i find it really offensive. So you have my sympathy there.

However, both my children have had raging awful eczema at times and it has been possible to get it under control by identifying the cause (allergens) nd topical steroids /emollients. You would never guess they had eczema at the moment. So it is possible to know just how excruciating eczema is and have completely clear skin

I'm sorry that your psoriasis is so severe and debilitating. My 10yo had eczema around his eyes and on his neck for about 3 months and quite a few people told me he had it because obviously I hadn't noticed🙄 But I accepted the suggestions about what would work with good grace because I know people just want to help. I might have felt differently though, if he had had it for years and there was an annoying build up of well meaning suggestions. Personally, I would never comment on anyone's health condition or offer suggestions, unless they are a friend and it's something I have personal experience of. Even then, only very cautiously. The only thing that cleared up my son's eczema in the end, was being diagnosed with Crohn's Disease and starting anti inflammatory medication. The topical creams only ever worked temporarily. But we didn't know the Crohn's treatment would help until it did! Nobody came up with that one😅

I don’t think anyone ever voluntarily claims to have psoriasis, it’s a shit, painful, tiring disease and I have it too along with joint involvement

What’s really helped me if going keto. It’s all clearing up and my joints don’t hurt, can you give that a go?

It's possibly too have it mildly but still too have it, just like mild hayfever or covid or anything else. Mild steroid creams clear up stress related definitely-excema for me. If my sister didn't have serious excema, I wouldn't necessarily know that it gets worse than irritating, and I wouldn't be lying saying that over the counter works on mine. I get that it's irritating to be given advice, but that doesn't mean the people you're criticising don't also have it.

For what it’s worth I do receive unsolicited advice about my asthma. People love to try to fix everything because they think it’s all fixable and you’re not doing the right thing.

I have psoriasis, ok, nowhere near as bad as yours, located only on my scalp, it itches, it bleeds, its painful, its crusty and at its best gives off huge flakes of skin, it's been confirmed, many years ago by a dermatologist.
I find you really judgemental though.

My daughter has eczema and is under consultant care. She has a virus now which triggers flare ups. I can hear her scratching two floors away. She is 7. She has not grown out of it.

“Yes, we have tried to eliminate cows milk. Thanks so much, random stranger, for such a novel idea and the implied insult that I would not have tried all the easy the obvious changes to save her this suffering”

Everyone is an expert as we have seen on this thread.

I hear you, my daughter has vitiligo on 95% of her body and not noticable until you see the natural skin colour on her arm. I first get asked, whats that on her arm? (i dont mind the curiosity) But it's the next sentence that bugs me, 'Have you tried...".

You didnt know what it was a few seconds ago.

I get you op. My 5yo has horrendous eczema, we're up half the night as she gets hot and itchy and sore. I hate people suggesting creams to me "childs farm is amazing, cleared little Tommy's skin completely", yes I have tried every cream in the bloody super market, yes I know steroids aren't ideal but when her skin is bleeding and she can't do anything other than itch it's necessary.

I can understand your frustration @wishfulthoughts3, as well intentioned as some people are it’s lost in them that the severity of your diagnosis is different to theirs (their aunties, mates, cousins neighbours etc). Suggestions have ranged from oats in my bath and various potions to specific diets - remember when Atkins was the go to cure for all? 🙄

I was diagnosed with psocratic arthritis over 20 years ago and have had periods where it’s been under reasonable control and times when the flare ups have lasted years and not decreased an inch matter what the dermatologist threw at it.

I currently look to have it semi under control. This is through a strict time consuming and agonising process several times a week plus daily treatments, light therapy and dietary changes (turns out I have an intolerance that adds to the flare ups).
It sucks, it’s expensive, it takes up 12-15 hours a week and even then it’s still there, only better than before.

I would probably ask if you’ve been able to try Dupixent. I work in drug development for AtD but appreciate these biologics are not always easy to access. There are quite a few coming through but NICE/formularies funding them will likely be a continued issue. I have a lot of sympathy reading this as while you develop and register new treatments, patients being able to access them (and if they actually work) is a major issue. I don’t know much about patients being able to access them as I don’t work in that area but are people being prescribed them? There are ones available for psoriasis/psa to e.g. Humira etc (and cheaper biosimilars).

I should have clarified I would never comment on someone’s health condition and this would only be in response to a question as I frequently get asked are we developing something for condition x….

@Worryaboutwork I'm another child's farm convert for my (disgnosed) eczema. It was the only thing to stop my bleeding wrists after ds was born, excellent that it's so cheap. I do have to go back to steroids from time to time, but my eczema is mild. Drives me mad but I have perspective...

I think the difference in severity confuses people with conditions like this. My little brother has had an operation for his eczema. His entire childhood was spent bleeding, in pain, wrapped in cold sheets, things rotating through the freezer for his allergies (to anything that isn't plastic). His allergies also mean that he has regular injections into his eyes to stop his eyelids from blistering and rubbing on his eyeballs causing blind spots. His asthma was equally horrific, we had machines at home to help him breathe while waiting on ambulances, lots of blue lighters.

So I think when people give what is to you op, useless advice, they're thinking about someone like me with relatively mild issues. Out of ignorance. They don't realise how it is for some people. Obviously not people like my brother on 10 different serious drugs a day, having their growth restricted due to the steroid volumes.

I think suggestions are fine if you have experience of psoriasis and psoriatic arthritis. But not if you dont. I dont want to hear that your brothers cousins dads dog had a bit of dry skin and used E45 to get rid of it. Its insulting.

15 year diagnosed psoriatic arthritis sufferer here. Been on so many immunosupressants. Latest biologic has failed so starting again. Fun times.

I have psoriasis all over my scalp. It's a mess. The amount of times people say to me 'have you tried head and shoulders' 🤦‍♀️

Come off it. No one is the repository of the sum of all human knowledge.

There are many, many things you don't know.

If someone recognizes a gap in your knowledge, the impulse is to rectify it. Someone outside of your situation will have a perspective you don't have.

Obviously, context is important.

If I tell DD not to cut towards herself on the chopping board, is that an insult? Or is it me having 30 years more experience with chopping boards and knives and me not wanting to see her get hurt.

This whole website is a place for advice. It is an insult site then? Yes, some advice is asked for specifically, but not always. A thread with someone complaining no one will buy her house. The suggestions to redecorate or lower the asking place are not insults.

If I see a friend with a new baby exhausted because the baby will only sleep in her arms, suggesting that they 'wear the baby' is not an insult. It's offering a solution, which many cultures use as standard. Allowing the baby to sleep on you while you get things done.

Yabu about deciding whether or someone has a health condition or not.
yadnbu regarding unsolicited advice on treatments or cures. I hate it regarding my health.

You have severe psoriasis. I have mild (diagnosed by a dermatologist during a significant (for me) flare) psoriasis. I’m not unaware of this but I can see how others might be if they only know someone like me.

I understand op, my husband and my mum both have psoriasis and it has been incredibly difficult for them at times, same my sister and her eczema but I have never once heard someone who doesn't have a skin condition claim they do.

DS has eczema that is dry, cracked, bleeding and painful and gets a hell of a lot worse in warm and humid conditions (but will he leave it alone?? Nope!), he has cream from the doctor and he’s been referred to dermatology but he still uses sudocreme for it too, and it does work for him. Not on you to bash those with either condition for using it, if it helps them it helps. It clearly doesn’t for you so don’t use it, fuck knows what your issue is with those that do.

if you actually read my posts you’ll realise I have 0 issue with those using it, I have lots of issues with them sticking their noses into my medical condition and recommending it as if it’s 100% guaranteed going to cure me. I don’t walk about everyday with a sign asking for advice on my skin but people still feel the need to comment and get involved

For you, it is a suggestion once a week. To them, it is the one suggestion they make every 5 years. They don't realise how bombarded you feel.

It's not going to stop.

The only change is how you choose to respond.

What scripts are you going to put in place?

I have psoriasis, psoriatic arthritis and other auto immune connective tissue disorders. I had inflammatory eye disease as well, several times before being ill enough to be prescribed biological treatments 12 years ago.

my consultant responded to me suggesting managing it by diet by saying she’d never had a patient in a wheelchair and hoped she never would. Diets are specific to individuals. I gave up eventually and took the drugs, within 3 weeks I could do the 3 mile walk i’d been unable to do in months.
Active inflammatory disease affects all major organs, so can the treatments. We make our choice and get on with it.

One of my now adult DC has severe excema (Serious infections, hospital, wraps, drips etc) another has less severe but still uncomfortable excema. I have a couple of little patches behind my knees. We all have excema. We're all happy to give any suggestion a go, as prescribed treatments tend to be inconsistent, and other things can work well. The most helpful suggestion we've had in a long time was bleach baths. Made a huge difference to adult DC. The person who suggested that didn't themselves have excema, but I don't hold that against them.

it just seems to be with visible skin conditions people give unsolicited advice and it’s always so forceful with no understanding that different things work for different people and no amount of lactose will stop my immune system attacking my skin. No, that’s just what you have experience with. You get “helpful”advice with cancer, friend with Crohns gets the “have you tried this?” It’s people trying to be helpful. And yes, it is annoying, and feels as if they’re trivialising your condition