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?

I had psoriasis come up suddenly in my last year at Uni. It crept up from ankles and engulfed my whole body.
I used to shiver as it would burn and throw out so much heat I struggled to maintain my body temperature at times.
I had light therapy which helped but as a skint student I couldn't make it to the out of town hospital regularly enough.
I still get spots now and I dread it coming back.
My dad has had it all his life and when he found out he passed it on to me he cried :(

@queenatom
I get ecxzema on hands and feet and like your dh ended up at one point having to wear cotton gloves at work with emollient underneath. Otherwise I bled on the paperwork. I am now fanatical about moisturing and avoiding putting ANYTHING bad on my hands. Including alcohol hand gel which is one of the worst triggers. Like someone else I found aloe Vera gel helped. But mainly constant vigilance to keep flare ups at bay.

@likeamillpond

GPs seem to be very ignorant regarding eczema. I had a very bad flare up recently. I was given the usual advice Use steroid cream and Moisturize.

They seem to think moisturizing is the big cure.
It really isn't.

Moisture was making my skin worse. I stopped moisturising and my skin started healing, I'm very careful now and only moisturise when my skin is calm and dry - any inflammation and I stay clear.

Dr Aron.

I am now two weeks into it, and I feel like an actual normal human being for the first time in my life. I've had it forever, I have (and my parents did when I was little) tried everything, fobbed off by doctors, dermatologists, allergy tests etc. Got stuck in a cycle of stronger and stronger antibiotics and steroids, then the steroid withdrawal, etc.

I have tried EVERYTHING. Nothing has worked. This has. For the first time in years I can tolerate wearing clothes without irritation, I have slept all through the night without waking up wanting to scratch my entire skin off, with blood stained sheets etc, I don't have to clean blood and skin out of my fingernails every morning. Was signed off work in December as I couldn't really move without pain. I was angry, snappy, constantly exhausted with the pain, the itching and the sheer hopelessness of it.

I've now left the house for the first time in years without wearing makeup (which made it all worse obviously) for the first time in my adult life, without feeling self conscious, sounds weird but I have a real problem looking people in the eye as I try to avoid eye contact as I somehow thought, if I don't look at people, they don't look at me and see my skin, if that makes sense? I can wear a proper bra for the first time in years!

I had heard about his regimen before and initially thought it all sounded a bit culty and weird, did loads of research, decided it was worth a shot (expensive, yes but then how much have I spent on other lotions and potions and prescriptions over the 30 odd years?).

And it's worked so far. It's not a cure, but it's a very successful management strategy. And it's an absolute crying shame that it's not prescribed (or even suggested!!!) by the NHS.

A PP said that their dad cried because he had passed it on to them. My dd has eczema, and she's already been on steroids for it, and already has the dreaded steroid withdrawal cycle happening. I am going to give it another few weeks with me (as a guinea pig if you will) and then I am going to start her on it.

Sorry that was long! It just might be helpful! I hate the gushing terms 'life changing' and 'miracle cure' etc. But in my case, I literally cannot believe it when I look at the pics from three weeks ago when I had my initial appointment to my face today.

I know just how you feel, OP.

I suffer with Psoriasis, mainly affecting my hands & feet. The skin gets so thick, scaly & dry that it cracks open and bleeds. The pain is so bad I can barely put my feet on the floor or pick up a pen or a knife & fork. The open wounds can let bacteria in, too, and I've had 3 bouts of Cellulitis.

These awful skin problems are disabling when they're so bad thay they affect your ability to do every day tasks like getting dressed etc. I'm gobsmacked some people don't understand that.

I agree with you. I knew someone with terrible eczema as a child and she had to wear gloves to protect her skin. I am sure that wasn't the extent of her troubles with it either but I was a small child so that's what I noticed.

Recently I've been getting something like psoriasis, the itching is incessant and the flaking is so ugly. Its debilitating on various fronts.

Sorry, I posted in sympathy, so sorry to hear it.

I have lived with chronic eczema since a baby. Have been hospitalised with it at times and it is incredibly debilitating when you have a really bad flare up. Currently only on my hands thank god but the constant hand washing and antibacterial gel is making me want to not go out. I honestly felt murderous a few months ago when I was made to put hand gel on in one shop, went to the shop next door and was asked to put more on, despite explaining that I had literally applied it less than a minute before. You know when you eat a packet of salt & vinegar crisps with a cut on you hand? Well putting that gel on open cracks and wounds and knowing all the time that it is going to cause your eczema to get even worse is something akin to torture for me. Completely sympathise with everyone’s experiences on here.

YANBU I too have had eczema my whole life. Including pompholyx on my palms which weeps, oozes, cracks, bleeds and frequently gets infected to the point of recurring cellulitis.

My son was refused entry on joining the Armed Forces because of it.

As I child I remember being dyed yellow and stinking from coal tar coated bandages... And the fact that no one would hold my dry, dusty, oozy hands 🥺

@asdnamechange

I’m very lucky to not have severe eczema anymore but I do still have a rare form of cheilitis (lip dermatitis)

Not only does it look unsightly but I haven’t been able to smile fully let alone wear any lipstick for years.

I feel that sentiment.🤝 Sometimes it sounds really patronising when people point it out and it's hard not to be sarcastic. And for the record it's massively debilitating, even on a seemingly small body part.

Have learnt a lot by reading this thanks OP

I really feel for you OP. I had ezcema as a child and again as an adult but just on my hands. It cracked and bled and was so painful on just a small area of my body. To have severe ezcema must be agony.

Yes it is a disability. I knew a woman who had to wear something very similar to a burns mask for nearly 5 years until the skin barrier was strong enough. Luckily she works for a company that understood and supported her every step of the way.

I agree with you op.

I’m uncomfortable, have chronic pain and poor sleep. I feel almost depressed by the small things that I’m unable to do, because of my skin. Or knowing that doing something that I can’t avoid is going to cause my skin to split and take weeks to heal. It’s relentless.

I had severe eczema most of my life. The backs of my knees were cracked, weeping and bleeding and my wrists and inner elbows would itch so much I resorted to scratching with scissors! Interestingly I became vegan at age 40, and my eczema disappeared. It was specifically dairy and egg that I gave up as I was previously vegetarian. Have you tried eliminating possible food triggers? I had no idea my eczema was an allergic reaction and I suffered all those years when I needn’t have!

SmallProvincial

YANBU I too have had eczema my whole life. Including pompholyx on my palms which weeps, oozes, cracks, bleeds and frequently

That’s the worst type of itch, from the tiny blisters! I get it on my hands from contact with raw fruit and vegetables so I use vinyl gloves when preparing food now.

I had an elderly pharmacist who used to make me a compound in a kilner jar when my hands broke out. I miss him :-( ii have lovely nails as I am constantly applying hand cream..

I'm very lucky never to have suffered a skin complaint however, each of my kids suffered eczema, which started when they were just weeks old.
I tried absolutely everything with them but to no avail, it used to upset me so much.
As babies they were smothered with so much prescription cream that they were like slippery bars of soap!
Very fortunately, they grew out of it when they hit puberty, although my daughter has to be careful with skincare products as some can give her mild eczema still.
I have nothing but utmost sympathy for anyone who suffers this terrible debilitating condition.
I wish they would put more research into finding a cure to free people from the suffering.

Sorry to those with the wince factor! Never had an issue until a few years back when I was very stressed at work and my feet suddenly started sheeting off skin, followed by my hands bubbling. Pompholyx eczema. I’d never had eczema before. I went to A&E when all the skin fell off my feet, they admitted me immediately. Had it not cleared up, I’d definitely consider it a disability. I couldn’t put on shoes and wore gloves for weeks. Sheets of skin kept falling off, constant insanely itchy bubbles everywhere. Extremely debilitating.

YANBU I don't have eczema but i have scalp psoriasis that at points has went down my face and ears, I felt so down when it was bad. The itch is totally unbearable.

Have you ever went private? I joined a new company that paid for private health insurance and after my first consultation i was given a topical ointment that cleared it up and keeps it at bay after suffering for years