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?

@Tessisme The medicine my daughter is on also used to treat Crohns. As it’s so expensive, it was only prescribed after topical steroids and auto immune suppressants has failed.

The problem here it seems is mainly about disliking unsolicited advice. I agree heartily it is especially annoying when it happens over and over. But you can't change people and how they react to you. Do you really want to give strangers power over how you feel and behave ? Are you going to allow them to ruin your day? In the end you can only change yourself and how you respond to others.

You could wear a sign: " please, no advice about my skin condition ", pinned to your lapel. Or you could aggressively ask", Are you an auto- immune/ dermatological specialist? No I didn't think so." Or you could joke , " I have leprosy. Want a hug?" Or simply, " Thank you, but no thank you. " Or a million other things that other Mumsnettists may come up with. The thing to do is not be offended and not take people's advice personally. Most people mean well.

I think YAB a bit U, only because I think anyone with any chronic, non-life threatening issue that makes them miserable gets this.

• Acne? - have you tried washing your face with soap?
• eczema? - have you tried steroid cream?
• migraines? - have you tried paracetamol?
• depression? - have you tried getting out in the fresh air?

I'm sorry you're so upset right now. I don't have experience with psoriasis but I do have eczema and well recognise waking up crying with cracked and bleeding skin.

I'm glad something was found to help your daughter @JumbleAndKitchen. It's often trial and error. I don't even know if my son's Crohn's medication is working for his Crohn's yet!

Eczema around both my eyes was one of the first signs of crohns for me before I went into the flare that got me diagnosed with it. My eyelids were so sore and crusty.

I have eczema and my brother in law has quite severe psoriasis.

I've never heard of anyone claiming to have either when they just have dry skin. I mean they are very different conditions and physically look different so I don't see how you would do that anyway.

People commenting on my eczema and/or making suggestions really annoys me though. Like I haven't already thought of/tried everything under the sun already. 🙄

I recently succumbed to a virus and a side effect was that I had horribly itchy eyelids and dry eyes for nearly two months. It has gradually waned now after all that time but it was extremely distressing and debilitating even though it wasn't what you had. It's just to say I empathise with those symptoms fwiw.

OP I also get the message and intent of your OP, it must feel like your long term condition is being minimised in one fell swoop when someone flippantly declares a symptom that is a spit in the ocean compared to what you have to endure.

A bit like declaring oneself "oh, I'm sooo OCD about the housework" hmm...

Psoriasis is an awful condition. My grandmother suffers from it and has lesions all over her body, but especially her scalp, to the point where she has extensive hair loss and now wears a wig.

I'm really sorry that you suffer with this too, OP. That said, I can't say I've ever heard of anyone claiming self-diagnosed psoriasis. Eczema, maybe. But perhaps it depends on your circles.

I completely get this OP. I have a skin condition that means my whole skin is really dry, scaly legs, flakes fly when I pull up sleeves etc and i jave to apply moisturizer daily, also have to bath in ointment and scrub my skin. But growing up everyone has always told me I've got eczema - this includes parents and various other people. However I don't have eczema! There's no red scly patches, no itching etc. It's basically just really bad dry skin! That I was born with and will always have, but it's definitely not eczema.

I have psoriasis and I get a lot of joint pain too so need to go to the docs about that.

At work I had a customer come up to me and asked what the red stuff on face is and recommended E45 🙄 even colleagues have commented on it, I'd never point something out to someone like that, im well aware. Luckily I'm not too self conscious about it on face. Legs are a different story!

Have you not read the OP?!?!?! You've just done it exactly what the OP has said annoys her and others with her condition ffs! 🤦🏼‍♀️

Thank you.

I’ve had eczema all my life and it cycles through debilitating flare ups to occasional phases of just appearing as bits of dry skin so even if you saw me on a good day I still have eczema. So in a way yabu. However, I empathise. After nearly 50+ years of diagnosis DM still asks me if I’ve changed my washing powder when I have a flare up. And if I had £1 for everyone who told me to go dairy free or only use natural products I’d be permanently on a Caribbean cruise. For a condition so common there is a lot of ignorance around eczema. For anyone interested, mine is a genetic problem that means I don’t produce enough skin oils to form a protective barrier so environmental allergens ( including organic ones) cause flare ups. This is alway worse when I’m stressed.

It's equivalent of
"oh I had depression a while back. Have you tried to relax and drink decaf green tea? Great for it"
🙄
I get you

The conditions themselves vary, though. I have eczema and have had since babyhood, it IS mostly controlled by moisturising and occasional topical steroids these days. My son is on Methotrexate because his isn't.

I hear you. Mine is stage 4 breast cancer. I could cure it if I just ate more brocoli apparently. Who knew!

This is my psoriasis I have it on the palms of my hands and soles of my feet, it's crippling but I just need to drink more water apparently.

and as well as the debilitating skin problems, psoriasis also attacks the joints which not many people know about.

Some types of psoriasis attack the joints - but not all types of psoriasis do. I’m sorry you’ve got the that causes joint problems; my friend has psoriatic arthritis and it’s horrible.

However, my psoriasis doesn’t affect my joints at all. And I also go for long periods when I’m completely clear of it. Neither of these things mean I don’t have ‘real’ psoriasis, though. Eczema and psoriasis vary a lot in severity, and just because not every case is at the severest end of the spectrum, that doesn’t mean they are ‘just dry skin’. When I get psoriasis flare-ups, nobody would mistake it for dry skin. I know this because I have regularly had people comment on it and ask me what disease I’ve got, and it was diagnosed by a dermatologist. Sometimes I’ve just had very small spots of it, and other times patches the size of tea plates, but it’s always very noticeable to others.

Similarly, my friend’s child has very severe eczema that basically covers her entire body and it’s absolutely awful for her and requires really intense treatments. My mother on the other hand has eczema only on certain areas of her body, and it flares up and calms down at different times. But it’s still eczema and has been diagnosed as such.

I completely get how annoying it is when people start suggesting moisturiser or oat baths or a raw vegan diet or whatever, though - it’s infuriating. I don’t think it necessarily means they don’t actually have a skin condition; I’m sure in a lot of cases they do have a milder form (and/or have convinced themselves that what was actually just a natural reduction in severity between flare-ups was somehow all down to them using E45 rather than mere coincidence).

I really feel for you, @Wokeuptired. That must be excruciating.

I'm now in my 30s and to look at me now you'd probably class me as one of those people in your thread. But as a child my eczema was horrific, debilitating. Soaked in the bath to remove my underwear from scabbed sores kids of horrible, unable to walk and in a pram u too I was 6 because of the cracking on my ankles. Just because someone may look like they don't have it doesn't mean they didn't really suffer at one time or another.

I can brush off the moisturiser suggestions, as I assume they don't understand that it's an autoimmune disease - but I am driven to a fullblown murderous rage by the woo-woo.

Is it on this thread yet? Anybody suggested an alkaline forming diet yet? Do we have the apple cider vinegar people here? Or the reiki and thinking calming thoughts ones? Or the evil spoon or elephant ornaments are bad luck brigade looking at FIL there?

Or the ones saying their Nan was fine after her hip was replaced? Good for fucking grandma, but the reason she needed her hip replaced was entirely different - 80 years of cumulative wear and tear isn't going to happen to her again, but if the immune system is still deciding to attack my own body, that's not going to fucking stop unless I take something to stop it.

And whilst we're at it, people can fuck off with the eww, I wouldn't ever take drugs, I've heard they cause cancer/somebody I heard of died after taking them, it's all Big Pharma shit.

a) at ten grand a pop, the NHS ain't doing it unless it works
b) even if I do get cancer from them, I'd probably get that from the untreated autoimmune disease in any case and
c) So I die. Big deal. I'd kind of like to have something resembling a life in the bit in between, thanks.

I hear you. I've had chronic psoriasis since I was 6 months old and I'm now 62. I've spent huge chunks of my life in hospital, been part of many medical trials, pretty much tried everything available and spent most of my younger life hiding away from everyone. My psoriasis covers 90% of my body, face and scalp. So I get you, really.

Now I have psoriasis, psoriatic arthritis, rheumatoid arthritis, osteoarthritis. I take all manner of drugs, the new biologics are pretty amazing and for the first time in my life I am nearly psoriasis free and, apart from my knees which need replacing, mostly pain free more often than not.

However, and I don't say this lightly, this isn't about them but about you. It's taken me many many years to understand that the wall I build around my emotions stops other people seeing the real me. Taking away the physical part of having psoriasis, being uncomfortable, in pain, cracked and bleeding skin, the emotional part of it is far worse. Being mortified when in some else's car or house and leaving a trail of skin behind, waking up with a partner and the bed full of skin and disgusting, often smelly creams, the absolute nerve of steel you have to portray in order to walk into a place or see people you don't know. It's absolutely soul destroying and crippling.I didn't wear anything with short sleeves until I was in my 30s.

But because we protect ourselves in these ways other people don't know how bad it is, we need to tell them. I'm guilty as the next person as just saying 'fine' when asked how I am, and playing down how difficult day to day is. Once I decided to stop doing that and learned to ignore well intentioned advice I became much less angry and introverted. Now when people say 'have you tried' I just smile and say yes and move on. Because they think they are being helpful, that's all. We want them to 'see' how it hurts, how insulting it is, but they can't because they don't have it. They might have only said that to one person in years, they don't connect the dots and see that it's something that everyone says everyday to you.

It's hard to say let it wash over you, but it will be better for you if you do. Don't forget to remind people how shit you are really feeling, even your loved ones are guilty of going along with your stock response of 'I'm fine' and need reminding sometimes.

I wish you all the best.

I hear you op. My young dd has eczema and we were waiting at the hospital for her outpatient appointment with the registrar. And what does my friend text me? "Have you tried shea butter?" 😳

OK this is going to sound odd on a thread about people recommending things we have all tried.

I know the thought of using soap on cracked red skin is going to have everyone wincing but; I was chatting to my carer about this thread, as a hobby he makes soap and one recipe he uses is made with lard and it actually helps my skin.

If I'm having a flare up where I need the 'magic bandages' as I call them it isn't going to help but for day to day it does.

He can't sell the soap because he hasn't got the certification but he can give it away. After talking about this he is making a batch, so if anyone wants to try some DM me with an address you feel safe to give me.

I understand OP. I have a couple of health conditions that people relate to with ‘oh I have that., and did you know feverfew fixes it.’ They very usually don’t have that, and Feverfew is not going to fix it.

I’ve stopped talking about it (seeking understanding) in my day to day life. If I need to discuss my health problems, I seek people with my health problems online - by way of support group forums. Or I speak to a doctor. There are a few people I follow on Twitter with similar health problems too

If it’s any consolation, everyone who makes it to older age is most likely going to have some difficult health condition, and they will get to know what it’s like to have their symptoms dismissed or minimised. It’s human nature, it seems to me.