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?

Agreed. I have a rare neurological condition. People still give unsolicited advice.

I feel your frustration OP, I also have psoriasis. I think the same can be said for many illnesses/conditions though. I have a friend who regularly jokes about her ADHA, only last night saying she hopes she doesn't need a c-section as her ADHA wouldn't handle the rest time afterwards. She does not have ADHD, she has poor concentration due to bad diet, anxiety and lack of exercise.

I had skin issues when I was younger and was told specifically it wasn't eczema but it was agonising.

I had to sleep with layers and layers of cream on, wrapped in bandages to stop me itching.
It would get to the point where I was scrape the itchy parts (mainly legs, feet, hands and arms) on the carpet because I just couldn't scratch it enough. I'd sit with ice cubes melting directly on my skin to try and sooth the itch.

I was on loads of different lotions, bath emollients, strong steroid creams like betamethasone etc, plus tablets and treated bandages.

Still had people suggest I try E45. Well aye.

Yes!!! My son has eczema and we are on a process through the GP and dietician etc. to keep it under control. We went to a family event over the weekend and everyone kept asking ‘have you tried this?’ And ‘what about this?’ It is so frustrating. I don’t want unsolicited advice from people! If I wanted it I would ask. Ugh. Rant over.

I have the same as you and also skipped straight to immunosuppressives, the amount of people that would say to me (and still do) “have you tried just not scratching it” drives me absolutely mad!

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

<laughs in complex health needs>

I totally agree people are only too willing to volunteer advice (& indeed commentary, yes the cracked & bleeding eczema on my hands is indeed very painful, thank you for ensuring everyone in the loo has a good gawp) on visible skin conditions, but anything visible (no, your magical diet won’t make me gain weight because my GI tract still won’t work properly/this is a wheelchair, not a pram, please address the occupant not the person behind it) will get the same. A whiff of the [usually] invisible will do it too (genuinely been offered an exorcism for my epilepsy 🤨); & there are an awful lot of people out there who use “migraine” when they mean “bad headache”. Objecting to that isn’t about being precious - headaches can be horrific - but migraine is a discrete condition & muddling of the two causes issues.

Ripping Indigenous Canadian children from their families & sending them to boarding schools where they frequently suffered abuse - beyond the intended breaking of tribal structures & familial bonds & the decimation of Indigenous culture & languages, I mean - was well-intentioned. The practice of institutionalising the disabled, ditto. Clearly it would be grossly offensive to suggest this compares to either of those things - not at all my intention, but rather, I merely wish to highlight that “well-intentioned” makes no difference to the outcome. Further, while some advice-givers are altruists simply motivated by empathy/sympathy/a desire to help or “fix things”; there are others who do it as a form of control/ego-boost/power: they know best, they are “graciously” imparting knowledge; & they will work up a story of rescuing some Poor Unfortunate with their wisdom & skill & bore their social circle (&/or Mumsnet 🤷‍♀️) with it.

I have had psoriasis since I was a child and I am 68. It broke out badly when I was 22 and has been awful at times. I have been covered in it from head to foot but lately I am in a sort of remission which is great. I have had phototherapy which seemed to put the brakes on and that was years ago.
Nowadays I only have it on my elbows, under my breasts and at the bottom of my spine. All is controllable with steroid cream which I only use when it begins to hurt.
I get the odd lump on my head which I zap with steroid lotion before it can take hold. I try very hard not to scratch but sometimes I scratch without even realising I am doing it ! And then of course it is too late......
That is my experience. I have found the cream to be helpful and will not apologise for it. I find some of the threads on this subject to be full of angry people which is unhelpful at best.

Oh and E45 does nothing for me. It is horrible

Wow! Is this like when a dog can tell their owner has an illness by sniffing? You can diagnose your friend by just looking at her? But you couldn't be saying that because it would be hypocritical.

You wouldn’t catch most people self diagnosing with other conditions like they do work psoriasis and eczema

You lost me there, because they absolutely do.

I have dyspraxia and migraines. Lots of people who're a bit clumsy says they have the former, lots of people with headaches say the latter. Including my husband.

It's fucking annoying, I get it but it's also a natural use of language. I use allergy instead of intolerance, because I mean "don't fucking feed me that", for example.

I try to shrug it off as people just trying to be helpful, for some with mild eczema E45 may have done the trick so I don't blame people for reccomending it if the topic of eczema has come up. No one knows how bad my eczema is because most of the time it's only over my legs, tummy and back, so I keep those areas covered. I do dislike it when I have braved the swimming pool, beach etc and someone I don't know randomly comes up and suggests something, it just reminds me that my skin is obvious and they have noticed.

Are you me? I’ve been on every one of the drugs you’ve mentioned!

I was taken off methotrexate six months before lockdown, because it had started to affect my liver, and due to lockdown I was discharged from my consultant’s care after being a patient for 20 years. Luckily my eczema has been fairly controlled apart from the occasional dry patch, and thankfully the unbearable urge to scratch has gone.

People with regular skin have no idea how traumatic and debilitating chronic skin conditions can be and my sympathies go to all of you who are suffering

YANBU OP. it drives me mad when people say "ohhh me too", and they genuinely have like a 2cm patch on their arm and nowhere else!

I have eczema. It was diagnosed by a doctor. I’m not ‘claiming’ anything.

sorry - i hear you, but YABVU. My son and my daughter both have eczema, In the summer, my daughter used to be so bad, she used to bleed from the cheeks. My son is smothered in hydrocortisone most of his days, as a child, he had to be wrapped at night with cream to help him, so yes, i know a little bit about eczema. People are just trying to help, you sound angry - i get its horrible, but really, people are just trying to help.

Oh - and my son has very very bad hayfever - for alot of weeks leading up to summer - he has to stay indoors with wraparound sunglasses on, his eyes are so bad, he cannot see out of them, they are almost glued shut its that bad - and when we do go out, people also try to help and say, oh, they have it bad too and they tried blah blah blah, im always grateful, they are trying to help and who knows, someone might!

@tennesseewhiskey1
sorry - i hear you, but YABVU. My son and my daughter both have eczema, In the summer, my daughter used to be so bad, she used to bleed from the cheeks. My son is smothered in hydrocortisone most of his days, as a child, he had to be wrapped at night with cream to help him, so yes, i know a little bit about eczema. People are just trying to help, you sound angry - i get its horrible, but really, people are just trying to help.

Yes I agree and if something works for you and you want to share and help others it's not very nice to be told you are wrong ! We all have our own experience of this thing !

I'm sorry you're in such debilitating pain and understand how draining that is.

I was diagnosed with eczema and saw a dermatologist. It's been uncomfortable and unsightly and frustrating and painful but it has never required the level of treatment you've had and hasn't interrupted my life in the same way. But it was still eczema.

I was diagnosed with psoriasis years ago. It really was entry level and rarely showed itself. So some psoriasis is mild. Presumably lots of people have mild to moderate psoriasis and base their experience on this.

Recently though got a really widespread outbreak (possibly mid-level)

The problem with psoriasis for me is that it never goes away and fingers crossed I do have a handle on it but there is always the fear that it may come back with a vengeance which I can't even bear to think about.
When I went for the light treatment I saw other people with skin cancer and people with eczema especially on their hands which was so bad I was almost grateful for my lot which at the time was 98% coverage (not my face).
It is a beast which lives with you and seems to appear at the very worst of times

Psoriasis is awful, sorry you're feeling bad today.
The sudocrem recommendation made me laugh though. I swear my mam would recommend it if I told her I had skin cancer. Miracle cream dontcha know?

I kind of get it but really it's all relevant to the person isn't it. I have Crohns and my partner has irritable bowel. Absolutely no comparison but truthfully he suffers more often than I do as he has no access to the 'good' meds. So whilst he suffers pretty much daily and has to watch food intake etc, I carry on until I have a flare up because the meds mostly keep me on track.

I am pleased that you know just how to cure you're friend.

I had the most miserable six months of my life with an auto-immune generated skin condition that covered my entire torso, but eventually dermatology tried me on phototherapy which, plus copious amounts of Balneum Plus, did the trick. Doctors now think it was caused by the treatments for breast cancer, but I have had mild outbreaks all my life. I feel for everybody with severe skin conditions.

I don't know any self-diagnosers in this way. I would assume most of these people just have mild cases.

I have atopic dermatitis. In childhood it was worse and as I was in another country with better access to specialists, I was under the regular care of an specialist. I had regular flare-ups on the insides of my elbows, around my eyes, and on my hands. When I grew, the intensity of this abated and now I get it much less. Most of the time you wouldn't know it to look at me.

I have had the same 'have you tried moisturising creams?' from GPs! Now I get to avoid it mostly since I just put in my steroid creams under regular prescription. The likes of epaderm, which I do use, I didn't like sudocream or e45, are good at moisturising the skin and making it less dry, but totally ineffective at dealing with the actual rashes.

I don't get anything effective for the eye flare-ups, but I get them less frequently, so it's harder to get a doctor to do for that. I got prescribed hydrocortisone cream once, which wasn't much good, and I sometimes use the mometasone furoate around the eyes as well, but I don't think that's really meant for the eye area. The cream I used to use as a child is not prescribed in the UK, but I did recently find that there are some licensed creams with the same active ingredient, so I'll be trying for that next time.

Unfortunately, I think the 'you should try X' in respect of your skin is just part of the general chorus of 'you should try/be doing X'.