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?

This is a timely post - I’ve got a DBIL who’s had psoriasis since adolescence and is now self-administering methotrexate (sp?) injections for psoriatic arthritis. He’s a single, typically blokey bloke and if ever his skin gets really bad (the joints are a much bigger issue than the skin as he’s got older) he sometimes slaps on a bit of E45 but by his own report it doesn’t really work and sometimes he bleeds through light work shirts etc and has to get changed. I don’t know why he only uses E45, tbh, I’ve wondered, because he’s got a great doctor, they must have a list of products? I do buy him stuff now and again if I read good things but I hope he knows I know it’s not going to fix it, next time I’m talking to him about it I’ll need to say.

I don’t know how I didn’t think of this. I have a different condition. Now tbf it’s not visible but it’s life-limiting and sometimes I need to disclose it. About 90% of the time when I say what’s going on I get well-meaning but fairly facile (if not actively rather dangerous) advice. The urge to say ‘sure let me run that past my consultant’ is sometimes strong. Everyone thinks they’re a bit of a doctor!

Thanks for flagging this, and sorry about your condition, it’s no joke.

Eek reading this was making scratch. So glad I am not the only one. 'Have you tried the new Head and Shoulders?' Yeah cos when my head is so sore, wind blowing on it outside hurts- that will do the trick. I have a good regime from dermatologist but it's time consuming. My partner always says, well it does work because it doesn't seem to cure it....so......annoying. Keeps telling me surely there is a tablet you can take, I strad of doing all this. Its not bad enough to outweigh the side effects of hard-core immunosuppresent stuff.

Ive had eczema since I was a toddler, along with asthma and hayfever, its like a holy trinity of buggered immune systems.

I had truly awful eczema in my early 20s. My bedsheets were stained with blood from scratching constantly, the bed was full of skin flakes and it was just so sore. I was vegan at the times but people would constantly tell me I should try going dairy free (it wasn't soya related either) as that would definitely fix it. A lot of times eczema doesn't have a specific food trigger.
I was on immuno suppressants too, azathioprine and then cyclosporin for a few years. I'd also been wet wrapping, using tacrolimus, vitamin D supplements and all sorts. People still suggested I try E45 (nope it makes my skin flair I'm allergic to lanolin). I've tried all sorts including Chinese herbs that resulted in an a&e visit. I reeeeeealllly reeeeally don't need unsolicited advice on how to manage my skin now. I'm 43 it's pretty good these days and honestly I've been there done that bought the t shirt and had to cut the labels out as it felt like barbed wire!

You have my sympathy. I am in my 60s and out of nowhere have developed a skin problem. Possibly the onset of an new allergic reaction having never reacted to anything in my life. .Everyone has a solution!! They mean well but l have tried the obvious stuff and it hasn't helped. I have actually found some of the advice upsetting as there is a subtle message l feel eg. Go off all bread as l noticed you eat toast and in our 60s we can't afford to be eating bread!!
By the way the only thing that stops the itch is plain old sudacrem.

I absolutely get this.

Honestly, if I'm talking to people I don't know, and who don't know how eczema has affected me, I choose to describe it as 'severe chronic dermatitis' because people take the most scientific name more seriously despite meaning the exact same thing.

I have had such bad eczema my entire life that I was approved for an intense and expensive biologic drug, and I am incredibly lucky that it worked- unlike every other medication I've tried- because it was very much my final option for treatment. I'd been through steroids, immunosuppressants, antihistamines, everything available pretty much since I was born. Even then, I had to go through hell to get this new drug, dupilumab. People just don't understand the impact severe skin diseases can have on someone's life; I've barely taken a day off work since starting this medication whereas before I had such severe pain and such frequent infections that colleagues were surprised if I made it a month without calling in sick. I was constantly exhausted from pain. I couldn't go in the sun, or in the cold, or during allergy season in the spring. Water hurt like hell, seawater even worse, and the hand-sanitisers stocked by most places during the height of COVID were excruciating. I grew up in a household with no soap because I couldn't use it, and my DM is the same. I remember other kids in school bullying me and joking that I was contagious, and I remember when I was hospitalised for skin infections in my childhood. Every doctor I went to would ask if I'd tried moisturiser, as if I was completely clueless, or told I would grow out of it as my mum wasn't right there beside me with exactly the same condition. Thanks to radical medication my skin is now a lot better, but I have to be just as careful around allergens and triggers. It's muted, not cured, and under very careful watch by a specialist dermatologist. It wasn't until seeing him that I realised it was just as bad as I thought, that I hadn't spent my whole life exaggerating the pain of 'just eczema' because that's what everyone seemed to think.

At the same time, I appreciate that a lot of people with mild eczema are professionally diagnosed. Realistically, they have the same condition as I do, but on a smaller scale and thankfully more easily treatable. I think there needs to be more education and understanding surrounding how these chronic illnesses affect people. Nobody who doesn't have a severe skin condition can truly understand, I think, but interest in research and new treatments might speed up if people knew just a little bit more about eczema, psoriasis and related conditions.

I've had plenty of terrible advice, too, I try to laugh at the ridiculousness once I get over the frustration. The worst so far is that I recently had a qualified nurse tell me I shouldn't be taking the intense medication my specialist prescribed and should instead try probiotics, because apparently they can fix everything! I only went in for an injection, and came out after a fifteen-minute lecture during which I think my glare could have rivalled Medusa.

I am with you op. People mean well but sometimes it really is better to keep ‘helpful’ suggestions to one’s self unless an opinion or suggestions is sought. I had acne when I was younger and the amount of people who told me how to wash my face or what to eat was unbelievable. It’s almost as if they are saying it’s a your fault and you don’t know how to manage your skin. I know that is not the intention but it is how it comes across to the sufferer.

I understand, I have crohn's, people think they can judge what I eat. They have zero idea of what is easy for me to digest and what isn't. I wish they'd keep their judgment to themselves.

YADNBU. I reported a thread in Health in which the OPs young dc wasn’t responding to topical steroids. All the posters were doing the usual thing if recommending dif moisturisers. MN added a post to advise that posters weren’t medically trained and to seek further support from doctor.

Theres just a culture around it that makes people feel like they are allowed to dole out half baked advice.

I just smile and nod as my colleagues suggest coconut oil or aveeno for my teen daughter who self injects biologics to keep her eczema under control.

What people don’t understand is the sense of responsibility people feel around skin conditions. My dd reality feels like it’s her fault 😞 So when people suggest something, it implies she’s done something wrong, or haven’t tried enough. The workload of managing bad eczema is huge - so when people glibly suggest stop eating dairy or switch moisturiser, it does imply there’s an action she could have taken but is too ill informed or lazy to do.

I'm with you OP Diagnosed with pustular psoriasis at 20, with psoriatic arthritis at 26.

Having pus run down your face is not much fun.

I'm permeantly disabled.

I bet people tell you that you are too young for arthritis too - that doesn't help.

OP I hear you and agree.

I too have psoriasis. Mine often manifests on my scalp. Yes I’ve tried head and shoulders thanks! Head and bloody shoulders!!

I’m so sorry to hear you’re suffering right now. I hope it recedes soon.

to all who are suffering.

I have had eczema since birth. I get angry when people suggest "cures" for me. Its not helpful. Recently my eczema has morphed and I now have a mixed eczema and psoriasis. This opens up more treatment options for me thankfully.

For me I live for 50/50 and a spray called enstilar which I find really helpful.

I've had psoriasis since I was nine years old. It's mainly confined to my scalp - but it covers my entire scalp. It's unsightly and unrelenting. The itchiness is extreme. I scatter horrid psoriatic dandruff all over my clothes/ shoulders and furniture I sit on in the house and am constantly hoovering. I've tried everything, and seen dozens of specialists, nothing works. I honestly don't believe in cures anymore, just in trying to manage and tolerate it as best I can.

I'm sorry you're suffering OP.

However, there is one pp on this thread, who was under a consultant, who said they didn't realise moisturising was so important.

People don't like to see others suffer, so they offer suggestions.

DD had to wet wrap for bed, bandages under uniform, consultant visits, but random well-wishers also gave a lot of advice.

The thing is, half of those things had not been suggested at medical appointments, so I was willing to try them. Cut out eggs/dairy gluten. Use this that and the other. We would check with the consultant and tried.

Luckily for us DD is now an adult and rarely has a flare-up. So for us the "she'll grow out of it" was a light at the end of the tunnel which proved true.

People mean well but then end up causing distress. Come up with some stock responses.

"Have you tried Sudovcream/E45/head and shoulders/moisturising?"
"Yes, thanks. I'm under a consultant and that was one of the first things we tried."

"Cut out eggs/dairy/meat/gluten/pickles. This bar from Lush helped my daughter/my son can't use E45 because the lanolin makes him worse/I take a bath in spinach once a week and that cured me."

The question is are you willing to try, after consultation with your doctor?

I also have psoriasis but am lucky that it's not severe and I'm pretty much in remission at the moment bar one elbow. Localized UV light treatment works well for me. I wouldn't ever suggest to someone to just use e45- but just because you can't see it doesn't mean it's not there.

Interestingly mine also completely disappeared in pregnancy along with IBS.

@DomPom47 @lillyblossoms

have you read the thread?

I have eczema in my ear canal according to my GP. Steroid spray helps but it inevitably returns after a fortnight. Currently it turns into a throbbing lump and ibuprofen is also needed. The only people giving me shit suggestions are the doctors! Every time I call for more spray they try to push olive oil on me. It does nothing! But every bloody time it’s their suggestion as for some reason some of them would rather I used that than the spray that their surgery gave me that actually does something.

That said if anyone has dealt with this issue with some miracle cure I am extremely open to suggestions.

Can't believe that this thread, about people randomly suggesting miracle creams and diets to those with complex illnesses under specialist care, has actually attracted people suggesting miracle creams and diets.

I have eczema since birth and my dc do too. It runs in the family. I've never been angry with suggestions because I've always wanted to try whatever works! Some do and others don't.

What gets me frustrated is after suggesting and they don't stop when I say I've tried it or can't use it for some reason. It's mainly those in the medical profession who do this because they think they know your skin or dc skin more than you do.

The only thing that works for us consistently is steroid ointment (not cream) despite being told not to use it regularly and constantly being prescribed cream and moisturisers instead. So I have to buy the ointment from boots myself.

I have eczema. It was bad when I was a young child (so my mum tells me, I don’t remember) but now it is very mild and mostly on my upper arms, occasionally on my hands. It has been diagnosed by a doctor as I asked about it when I was there about something else. I am a nurse so wash my hands a lot. This can occasionally cause it to flare and is noted in my occupational health file.

Looking at what you’ve written, I suspect you’d think I didn’t have it. I find this dismissive and rude. I accept that I’m lucky it’s mild and has minimal impact on me. But that doesn’t mean I’ve made it up.

I realise it’s annoying when people offer unsolicited advice, especially when it seems patronising and they have a lack of knowledge about your condition. But they are only trying to help. They probably feel bad that you are suffering and don’t know what else to say.

I also hear you. I have a phobia of vomit. People say "I don't like being sick either, or "I have a phobia about x, y,z"
You really have no idea how it is to live with the constant fear and arranging your entire life around it. You really don't!

Are you not grateful for suggestions because sometimes they actually help? 10 year old has eczema since he was a baby, in the winter he falls apart. Yes everyone thinks they have the answer, but we’d never have found the combination that works for him if we hadn’t listened. (I will acknowledge that pharmacies in general have no clue what they’re talking about and I feel like telling them all to non e45 and stop recommending it for something it is not for!!)

I have read the thread and the OP had May every sympathy. My recommendations were not from someone with a little bit of itchy or flaky skin but based on the real life experiences of a friend from work who has suffered for years and whose skin condition has had an impact on other parts of their life - mainly arthritis. I made the recommendations thinking it may be useful to either the OP or to someone else who may be reading the thread. I am not undermining the OP experience and don’t mean to make her frustrated or upset by my recommendations if that’s how it’s read I apologise.

Someone on Mumsnet once said something along the lines of 'unsolicited advice is an insult' & that's stuck with me ever since I read it.