To think some people don't understand that eczema can be a disability?

[Hard2Find]

I have had eczema all my life and it impacts on my day to day life. There are many many things that I just can't do because of it. However I find people can really struggle to understand that people can be impacted by eczema differently.

Some people have small patches, others had it as kids and then grew out of it, others have it impact the quality of their lives, and others can be hospitalised.

Eczema has at times made my life unbearable. I am in pain, I can't do the things I enjoy or work in fields I am interested in. It leaves me feeling and looking horrid. If it's on my face people stare. I have to think constantly about what I do, buy, eat, touch. I struggle to do day to day things. I have a baby and just looking after her has left my hands inflamed and infected.

AIBU to think that for some eczema is not just a rash. It is a disability that impacts on their day to day life?

@GottaGetThatPorkPie I also had eczema in my ear canals. Painful and so so itchy. Thankfully it cleared up after about two years and no damage was done, but at the time it was awful. I think the worst thing was the lack of sleep due to the pain/itching. But it seems so silly when you say you haven't slept because of your itchy ears!
My eczema is much better these days, but annoyingly it is often bad on my face and I feel so self conscious.

Yanbu but I don't think people are being mean by not realising how severe excema can be, I think they just don't know. A family friend of ours was on immunosuppresents because of her excema being severe. I wasn't aware of it until the shielding subject came along, but I didn't disbelieve her and am sympathetic to it. I hadn't known it could be quite so bad until that, but I wouldn't have doubted anyone who told me it could be. It's just something I don't know a lot about. I've had very mild excema myself, but it is related to allergies and it comes and goes.

YANBU. My son has severe eczema. When he has a flare up he can’t even wear normal clothes. He has to take everything off and wraps himself up in a super soft fleece robe. He wakes up in tears in the middle of the night. Warm baths at 3am are a regular thing for us, it’s the only thing that soothes him. It’s awful and very debilitating.

My dp suffers with it horrendously. His poor hands look like they’ve been burnt and his fingers often go infected. He went to see a specialist about it once who just shrugged and said “it’s eczema”. He had been waiting 6 months for the appointment and it lasted 5 minutes.

Yanbu but I don't think people are being mean by not realising how severe excema can be, I think they just don't know.

I don't think it's mean. Many people just genuinely don't know that it isn't some simple but persisten rash or similar. I had no idea about the extent it can affect someone's life to until I met someone with bad exzema. This is common with many ilnesses. And then it still varies because there are different levels within these ilnesses.

*i too don't think it's mean
It should have said

Never realised how debilitating it could be until DS was born and developed a Severe case. It's heartbreaking at times.
Prior to him, I was ignorant as I didn't know anyone with eczema and genuinely thought it was dry skin.

I had eczema quite badly as a child. I remember being permanently itchy and scabby. It went hand in hand with severe asthma too. Fun times.
As an adult it comes back with a vengeance if I spend too much time in the sun. Starts as prickly heat and then bam, big weepy areas if I'm not on top of it quickly.
I currently have a patch on my right arm that seems quite permanent. Haven't been able to even talk to a GP since who knows when so it's not getting any treatment. I also had a case of thrush that I have treated but is now eczema. I have no idea what to do about that as you can't put steroid cream on your piss flaps. I've been treating with Canesten and some zinc oxide cream with some lidocaine in it which at least stops the itching. However all that happens is it gets a bit better and then comes straight back. Sometimes even sitting down is painful.

Did anyone see the BBC series Diagnosis Detectives? There was a patient with a very bad case of eczema and one of the doctors described it as a "wild fire". It starts in one spot and if you don't beat it down it takes over. The patient in question had developed vitiligo from the constant itching.

Absolute sympathy here to anyone with severe excema. A close friend suffers terribly, and now has red skin syndrome from years of being prescribed steroids. She suffers every day and her quality of life is reduced by it. Horrible disease.

Unfortunately this is true for most chronic illnesses. Those who haven’t experienced it think eczema is just a rash, endometriosis is just a bit of period pain, migraines are just a bit of a headache, ME is just feeling a bit tired.

Most people have no idea how awful all this can be. My twins had awful eczema as babies and doctors were so dismissive - here, stick some aveeno or a bit of steroid cream on it. They couldn’t tell the doctors how painful it was but I guarantee an adult in that state would be complaining of pain.

Luckily for them it resolved when we cut out dairy and soy but appears again any time they are exposed.

Clearly from the results some people don’t understand.

YANBU - severe eczema can be very debilitating.

If you haven't already, could you ask your GP for a referral to a consultant dermatologist and ask about immunosuppressant meds?
These have been life changing for me. (And I don't need to shield, they have minimal impact on Covid risk for me, but it would depend on your overall health).

I think part of the reason people misunderstand eczema is that the severest cases are often controlled by hefty medication.

My heart breaks for all those who have kids with bad eczema. It's so crappy and I wish more research was being done to find an actual cure. My mother has even worse eczema than me and had to spend lots of time in hospital in isolation. A cure would be amazing!

I am so sorry that all of you suffer. YANBU.

I have had eczema all my life but no where need as bad as some of the pp. Sometimes it's manageable. Sometimes it's dormant. Other times it's dreadful.

I remember working in a pub and my hands were dreadful because of the alcohol and cleaning fluids. My hands would crack, split and peel. The skin on my fingertips would just peel off. I still have the lines on my fingertips where the skin healed. My fingerprints have now changed because of these lines.

I remember having to wear tights at school in summer because my legs were covered in red blotches. The tights made them itch more but I needed to cover them.

I remember having a giant red patch across my shoulder blades due to stress when planning my wedding. That was great when my dress was strapless.

My mum suffers as well. Hers is psoriasis. At one point her eye was swollen shut because of a flare up around her eye. She now has psoriatic arthritis. It started with her toe aching and quickly spread across her whole body. Within a month she could hardly walk.

Have spent 90% days f my life head to toe psoriasis. Not the same thing but physically and mentally impacts much the same way. YANBU.

So good to see this thread.

DH has it and it’s so debilitating. It’s brought on by stress and not helped by the many people who tell him to use coconut oil or bathe with oats.

@ChaToilLeam are you able to share what worked?

YANBU at all. I had mild eczema as a child but my brother had it really badly and as an adult looking back I definitely consider that it was a disability for him, it had a huge effect on all our lives (his most of all of course, and a huge amount of time/energy managing it for my mum).

In a total freak discovery, his eczema totally disappeared on holiday one year in his late teens, and my parents eventually clocked it was because the water there was softer. They installed a water softening system at home and it totally went. He still has dry skin but nothing more - it was honestly miraculous.

@Imloosingmyshit

Have spent 90% days f my life head to toe psoriasis. Not the same thing but physically and mentally impacts much the same way. YANBU.

Psoriasis also sucks. I think the mental impact is something that can easily be forgotten about. The pain, sleep deprivation, physical appearance, and restrictions on what you can do can really impact on your mental health.

My DM has severe psoriasis so I totally agree with you. Someone once asked her if she had been in a fire. I have never lost my shit quite as much as I did that day.

Different things work for different people as well so you may know someone with severe eczema who has it under control and other people have tried 500+ treatments and got nowhere. I've pretty much grown out of it, but if I eat too much dairy it flares up again.

I've currently got (mild) eczema on my toe and it's driving me mad because I can't scratch it properly!

I'm currently having a huge flair up especially on my hands, which are cracked and split. If one more person tells me to use hand cream or that Okeefs stuff. I've given trying to explain it's not that kind of cracked... your skin just splits open. The only thing I found to help the soreness were blister plastes

My phone no longer recognises my fingerprint.

I've also found a lot of HCP's don't have a clue.

HCP.. seeing sore skin.. "Oh that looks sore, what is it
Me.. Exzema
HCP.. are you sure, it looks very sore
ME... yes it is sore, it's eczema
HCP... I would get the GP to look at that

I've even been turned away from giving blood

YANBU. My sister suffers with it terribly and it has affected all sorts of things for her. She has also suffered from people expressing disgust at the sight of it, thinking it's 'catching' etc.

I’ve had great success getting rid of very severe psoriasis using probiotics - proper ones, optibac extra - and combining that with vegetable juices if anybody thinks that might help them

I healed my ezcema completely after 25+ years of suffering by stopping all steroid usage - oral and topical cream.

It was an incredibly brutal process but 100% worth it. I experienced Red Skin Syndrome for nearly 2 years, but my skin is perfect now - I don't need to put anything on after the shower or in general. I use a bit of moisturiser for my face and that's it.

I believe what I had was steroid-induced ezcema. Until the beginning usage of steroid creams in the 1950's ezcema was a childhood disease. It's only when steroid creams came into play that ezcema persisted into adulthood. I know correlation isn't causation but I think there is something to this.

I recommend visiting ITSAN and looking into Topical Steroid Withdrawal.

And yes! It can definitely be a disability. I suffered terribly with it - affected my social life, my work life, everything.

Hugs to all suffering.

I had eczema as a child (disappeared on its own when I was in my teens, thank god) and my mum is covered neck to ankles in psoriasis. I still didn't know eczema could get that bad, so thank you for this thread.