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 get you OP.

I have PRP. No-one has ever heard of it. Autoimmune skin disease.

Not sure if it's an environmental thing or a reaction to abuse.....

#The body keeps the score#

My son had eczema on his cheeks when little, he reacted to cows milk but no doctor acknowledged this, they all claimed it must be the washing powder or the air or some other reason. We saw a skin soecialist who told me that my son’s eczema couldn’t possibly be due to milk. So I think you are BU and judgy. Maybe a doctor has told them it’s eczema, maybe it is eczema.

I’m not doubting that lots of people do have it. But when you say that you have psoriasis/eczema and people are like ‘oh yeah I had that and you must use e45/sudocrem/whatever moisturiser for it!’ its both frustrating and insulting. It’s just my opinion (maybe I’m wrong) that the conditions are not seen as being as debilitating as they actually are. People just throw the terms about as if it’s synonymous with a bit of dry or irritated skin and it undermines how bad the conditions actually are

I have psorasis but it ranges from almost indiscernible to bleeding and crusty- definitely impacted by my stress levels.

If you caught me on a good day, you would say I don't have it. But of course because (psorasis) skin replenishes over 2-3 days, a few days can make a huge difference in my skin. So you might think I only suffer from dry skin on a good day.

(I was rejected for a trial for a new drug, as my problem areas are under clothing and I went for an interview on a good day)

I absolutely feel for you, op.

My daughter has eczema and it's relentless.

The amount of people who have made inane suggestions boggles my mind. Or my favourite 'oh that looks sore, have you tried XYZ cream??'

😓😡

But presumably since you have it you know that different treatments work for different people and you would never tell another psoriasis suffer that they absolutely must use XYZ and it would fix it and take it away? It’s one thing making suggestions obviously and telling people what worked for you but I’m talking about people who are like Oh you just use this moisturiser! Or better yet, stop eating lactose/gluten/whatever and it will stop it etc etc. 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. You even see people commenting like than on posts on MN. I’ve never been given unwanted or unsolicited advice for what I should be doing with my asthma for example but with visible skin conditions it seems to just be fair game x

Omg exactly!!! It’s so so unbelievably frustrating😡

I really feel for your daughter, sending lots of good thoughts💜

Sorry @coxesorangepippin I forgot to quote you in my comment above x

Yes it’s so so annoying the suggestions.
Worst for me seems to be parents or people that know toddlers or babies who get dry skin and they suggest things and insist I try them. I can shrug off a suggestion but it’s the insistence and the fact I’ve had it since I was young so there’s not much I’ve not tried.
Ive found stuff that works now (thanks to adult friends with eczema) so I don’t get it as much anymore but it did used to annoy me so much.

I'm sorry you're suffering with psoriasis so badly OP but I do think YABU. Most people who give suggestions are trying to be helpful as with skin conditions there is no 'one size fits all' treatment or cure. My son suffers with eczema and we are yet to find the trigger for it. We have however managed to find a management plan. I'm good days, it does look like mildly agitated skin but on bad days, it's red raw and bleeding.

My sister in law has psoriasis. It started in her late 20's. It's at the point where her skin flakes and bleeds. Her hair scalp is covered as are her arms and legs, back and neck. She does not like to go out to places where she has to socialise indoors as it means people can see a sea of skin flakes when she leaves. She is always fully covered top to toe- imagine a burka style dress. (No disrespect intended) She has tried a multitude of treatments that she wouldn't have known about had somebody not suggested them. None of them worked for her but it was well worth trying in case one of them did.

I completely understand. I have psoriasis and psoriatic arthritis..actually had psoriatic arthritis before the visible psoriasis which I never knew could happen, but there you go. Also have lupus, ulcerative colitis etc which I've now found out are actually all sub problems from a a very rare terminal illness, and I'm 37 and people always say things like, have you tried Epsom bath salts, they cured me etc. I now also get oh your only 37, you'll be fine, even though my doctors have told me I most definitely won't be, so yeh I understand OP. Honestly in the past two days three different people have told me, oh you're still young, you'll become healthy again and live a long life. Maybe they're just trying to cheer me up, I don't know, but it can get a tad annoying

I've had both (diagnosised by doctors) and the unsolicited advise is very frustrating, infuriating even. But I never considered if the person was diagnosed or not, and I don't have reason to believe that everyone was or wasnt.

It was actually the people who knew someone or read something who were the most annoying

I only give advise if asked for and prefix with this worked for me or seems to work for a lot of people. Same with Crohn's the latest adventure in my autoimmune merry go round.

Yeah i think it’s the way they say it. If someone kindly offers suggestions I’ll thank them but politely tell them I’m not looking for suggestions. 99% of times the suggestions are almost insulting- if someone tells you they are on a cocktail of dermatology drugs and the reply is that you should absolutely use e45 or sudocrem then it’s actually really frustrating. Personally I feel embarrassed and like people should mind their own business and just because it’s a visibly condition doesn’t make it a free for all to offer advice, like if someone started giving me advice and telling me what I had to do for my asthma I would find it intrusive because they have no clue what I’ve tried already or specific details and it’s the same for skin conditions but because it’s visible people have much less boundaries. It’s also the way people say it- eg, you HAVE to use this, this WILL take it away. 0 understanding of how bad the conditions can be. There are frequently comments like that on MN.

sorry to hear about your SIL, hope she is able to find something that helps soon x

You’ve got the perfect balance by the sounds of it- only giving advice if asked for. It’s so infuriating isn’t it that people think they know everything about someone else’s skin. So sorry to hear you’ve got crohns too, sending best wishes x

It’s always epsom salts isn’t it!😤 grrr. Really sorry to hear about your other health conditions, that must be hard enough to deal with nevermind with silly insulting comments from people who have no idea what they are talking about x

I have psoriasis - diagnosed by a doctor when I went to see them about something else - they actually told me off for not going to see them about it because it can cause joint problems. But the reality is apart from the appearance of it I wouldn't even know I have it. It causes me no pain/irritation, it's just there - and I know it goes away of it's own accord when I'm less stressed.

So whilst I understand you being annoyed at people making unhelpful comments, especially when you're really struggling with it. Yabu to assume that because people aren't suffering with it that they don't have it.

I'm sorry that you're struggling though (I do suffer with another long term condition which causes me a lot of pain so I do have some understanding of what you're going through) and I hope you manage to give some way to control/relieve it.

I understand where you are coming from.

I’ve had what is a mild case for the last ten years. My dad also has it, at times quite severe and other times, it just clears up completely. He says when his weight drops below a certain amount his clears up. He swears by this and actually documents it.

People just see it as dry skin and want to help, but they are ignorant as to what psoriasis actually is - an autoimmune condition that causes the skin to regenerate itself at a much faster rate.

So little is known about autoimmune conditions. More and more the suggestion is to follow a gluten free diet as there is a school of thought that autoimmune conditions start within the gut ie leaky gut so to heal that is to address the root cause.

I do try to follow a gluten free diet and some of my patches that had been there for ten years have cleared. (I was also psoriasis free during my pregnancy). I follow this as I also have hypothyroidism and there is good reason to suggest gluten-free as the autoimmune antibodies can flare up as they mistaken gluten for thyroid hormone. The reasoning being that their composition is similar.

Everybody is different though. What works for one does not necessarily work for the next person.

Also sometimes the most random, available on the shelf items can help so it's not always a crazy piece of advice- for example, child's farm helped my aunts eczema even though steroid cream and ointments didn't. When you're going through to, it feels unhelpful and ridiculous when somebody tries to give a suggestion as you feel you've exhausted all avenues already but I do think that 9/10 times people have good intentions.

Haha, yep, always Epsom salts.domt get me wrong, I really do enjoy an epsom salt bath, I do find it helps, but it's definitely not going to cure me. And thank you. I'm sorry to hear about your health too, it's really not easy at all. Sending you love and 💐 and honestly if you ever need to chat, please message me, my private mail is always open to anyone who needs it

yeah I agree it’s well intentioned but in my opinion it’s rude to comment about someone’s medical condition or suggest things when you don’t know anything about it and it’s not your business to even offer comments or advice if you haven’t been asked for it(when I say you I don’t actually mean you specifically I mean you in general!) if someone started commenting on my asthma and asking what I take and have I tried XYZ because it will DEFINITELY fix it I would tell them to back off and mind their own business, skin problems shouldn’t be any different just because it’s visible x

My friend from work has psoriasis. It is at its worse when she is stressed and has really found https://www.ultrabeehealth.co.uk/products/exeskin-eczema-cream?variant=41665377435848&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=EAIaIQobChMIhoSEyfyv_wIVg9V3Ch2xjg7dEAQYAiABEgJZuPD_BwE this cream soothing and also she gets acupuncture currently done twice a month which helps with stress and her arthritis which in her case is connected to psoriasis.
it impacts her a great deal and some days are better than most but I really do feel for her as when it gets bad (itchy, bleeding, sore) she is in a great deal of discomfort.
Hope you manage to find something that works for you. People when they compare their own skin conditions to others don’t always have the facts and we always assume our problems are bigger than others but that’s just ignorance rather than anything malicious etc.

Hi OP, I'd recommend you contact the Margaret Hills Clinic in Coventry for psoriatic arthritis. They have a diet that they put you on for about 6 months - it's in a nutshell no old meat - only young, so think lamb or chicken; absolutely no tomatoes or berries of any kind; no sugar, caffeine or alcohol and no processed food. So basically it's roast dinner every night and water to drink. Plus molasses and something else - maybe apple cider vinegar but I can't remember. A family member follows this every few years and it gets rid - they go from crippling psoriatic arthritis and unable to function / walk properly to being fine again - it's not easy, but it really does work, and definitively preferable to the many pills offered which can do other long-term damage to your body. I don't work for them - I've just seen the effects several times over, from someone close who was far too young to be suffering in such a way. Please contact them for more information as It's possible my information is now out of date and they have an updated diet available to follow. Best of luck!

Suggestion … Find a line that shuts people up… “I don’t discuss my health” or “Thanks, I’ll Google that later” and change the subject.

FWIW I had cancer last year, told very few people but several of those who became aware seemed to think it was ok to tell me all about the illnesses and deaths of people they had known … yuk.

I've had eczema since I was a toddler, and it has always been awful. I didn't 'grow' out of it as many suggested.

Totally agree OP, my worst thing is when someone tells me 'i had a bit of eczema on my arms for a bit' x many years ago. Even GP's tell people 'its just a bit of eczema that will go away'

Um no, thats dry skin or a skin irritation. Eczema affects everything for me, clothes I wear, things i eat, products I use. I had an awful flare up just before COVID started and I had 2 months off sick from work because I was so so anxious and upset and in pain.

You are frustrated but yabu. I have psoriasis all over my body, have been seeing dermatologists regularly for over 30 years. I have never met someone claim something undiagnosed is psoriasis, and would shout from the rooftops that moisturiser is an established first line of treatment. I didn’t realise this myself until only a couple of years ago and now try much harder to moisturise regularly, although it’s challenging on top of my topical creams and light therapy sessions. I agree it’s annoying if people say something absolutely will work, but it is true that there is a huge variation of effectiveness for different people and different things are worth trying. It’s like hyperemesis when pregnant- it seems completely random to me which medication will work for people and also whether it will work the same from one pregnancy to the next.