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?

Yanbu.

I know someone who has extremely severe psoriasis from head to toe, and it was only when he went for light therapy that it started to improve. My god he suffered with it.

People think conditions to do with skin are trivial and you can just whack some cream on and be done with it. Not that simple! They can so debilitating and life restricting.

My son has quite severe eczema, we had to do a full exclusion diet to get it under control and now he's free from quite a few of the top 14 allergens but if we slip up if comes straight back, he scratches until it's bleeding so definitely not just a rash, as you say. It definitely is a disability of severe.

It's taken pretty seriously in nursing, we have an annual hand check and any skin concerns have to be referred through occupational health, you get alternative gloves, soaps. I have seen someone be off long term when her skin broke down and you might get alternative duties that don't involve so much handwashing or some people change role altogether to something more desk based.

This thread has made me so sad. I'm sorry so many of you gave suffered so badly. My 3yo has quite bad eczema, she wears scratch sleeve most of the day but if I'm not looking she'll have it off and will be scratching. It's so frustrating. The constant cycle of putting cream on is hell for us both. I really hope she grows out of it because my heart breaks for her. My older dd had it mildly but grew out of it aged two and my dh has it quite badly in the summer time. Yanbu

My friend's daughter is nine and has severe eczema, especially around her mouth. It gets worse as her father doesnt look after it properly when she is with him. It is causing her to have behavioural problems because she is in pain and also she is teased so much by other kids.

People don’t realise how bad it can be. DS’s mercifully responded really well to the child’s farm lotion but it’s not just a rash - it can be utterly debilitating.

A PP have said, most people just don't know how painful it can be. Ive had eczema my whole life and had no idea until I had a flare up and couldn't sleep I was so itchy. I used bandages to cover the bad spots on my legs but would wake up bleeding as of taken them off in my sleep to scratch.

It's our own fault, really.

We think it looks disgusting, offputting - so we try to hide it. We get really good at dressing in such a way that the majority is hidden. We push through the pain.

We keep it hidden and we pretend we're fine, so no one has the mental image of just how bad it really is.

And then we're surprised no one understands how much we suffer.

I went on a disability awareness course. "Do you think this is a disability?" asks the instructor, "Raise your hand if so."

He rattled through lots of 'obvious' disabilities. When he got to eczema, I think I might have been the only person with a hand up.

Until you live it, you can't understand it.

Am I ashamed? I want to say no, but I also know I want to hide the bad days with the bleeding, the cracking, the scabbing, the pus and the skin falling off. I'd rather people think I don't walk much because I'm fat and lazy rather than because my feet have no skin on them and it hurts like hell with every step.

Maybe I am ashamed.

Which brings me back to, it's our own fault really. We'd rather have the lack of pity/disgust than the actual awareness. I can't bear the thought of someone looking at me and seeing only my eczema (even if well hidden) so I'd rather downplay it.

YANBU. My husband has severe eczema and has been hospitalised with sepsis when he has had whole body skin infections. It is awful and I wish there was a way to make it better for him.

I feel for you OP.

My daughter has been hospitalised several times. With her eczema comes life threatening skin infections and asthma. Imagine a cold sore that covers your entire body and glues your fingers together. As a toddler she was delayed as she was so swaddled and her hands wrapped up she couldnt play. Her schooldays were badly affected. Folks who think it's just a rash have no idea.

My DP has it, badly - it got worse and worse over many years. I’m very good at getting bloodstains out of clothes and bedding. Finally a specialist was able to give him something that actually worked and while it’s not gone, it is so much better. It was affecting his mental as well as physical health, he became depressed and so hopeless about it, he didn’t want to go back and see the doctor again, and again.

The secondary skin infections were just awful.

Yanbu I have sever psoriasis currently under control with biologics but it is crippling when it isn’t under control. The pain, the bleeding, the itching, lack of sleep etc.

You’re right, I definitely didn’t know eczema could be that bad

Thankyou for this thread OP - I literally had no idea how debilitating it could be, thought it was just dry skin! So my eyes have been well and truly opened. Hopefully other ignorant people like myself will see this and have more awareness and consideration for eczema sufferers in future.

Yep - my husband suffers from eczema and, at its worst, it is very disruptive and upsetting for him. All the alcoholic handgels because of COVID have caused a massive flare up on his hands and wrists to the point where he struggles to use a mouse for work because the grip causes the skin to split and bleed. He is currently living in white cotton gloves with thick layers of emollient underneath.

I really suffered at school. Trying to hold a pencil meant my sore fingers would rub together, and I would stain the paper from my weepy hands. And I dreaded those times when I was told to hold hands with another child. Not only was it painful, but no other child wanted to hold my rough, often weeping, hand. And if I'm quite honest I didn't want to hold hands with the other little girl who also had eczema for the same reason!

Yep. From the age of 5 to approx 8/9 my DC had severe eczema, along with diagnosed skin and air allergies.

They were under direct care of the hospital. GPs fobbed us off and kept prescribing creams, antibiotics and topical steroids. When DC eventually got seen by a TEAM of dermatologists due to a life threatening infection, they were quite angry that our GP surgery hadn't referred DC sooner.

Besides being sick with worry and the damage to DC's health and well-being being, the financial impact of buying certain expensive foods, clothing, bedding, equipment and creams had a massive knock on effect.

I think the people who've voted YABU have no idea what they are talking about tbh and only have experience of the more common occasional patches type eczema.

A lady I know is affected hugely by her eczema. She struggles to go to work a lot of the time, it has caused her issues with her eyesight as her eyes swell so much from it. It's absolutely horrid for her.

I had bad eczema for a long time in my ear canals which caused profound hearing loss for a long time requiring frequent hospital trips and constant ear infections. That went on for years and thankfully cleared up but likely will be back at some point.

People experience it in varying degrees, it absolutely can be debilitating.

I am immunosuppressants because of my eczema. So I’m shielding. Maybe the same medication @cookiemonster5 mentioned!!
With it I just need to apply emollient about a dozen times a year.
Without it I can’t sleep, bleed, my face burns and itches and it’s torture.
People who ask if I have tried Aveeno or hydrocortisone give me the rage.

Completely agree with you. My sister suffered horribly with it throughout her life. It has a HUGE impact on day to day life.

She's had it since infancy and it's not only the constant physical pain but the emotional impact too. As a small child the children in school refused to hold her hand her knuckles would be cracked and weeping. The stress, agitation and disruptive sleep has a real impact on her mood. It's really an awful thing to live with.

I've finally found my people!! Luckily my eczema is ok now as an adult, but it was hideous in my childhood. Wet wraps, scratching until you bleed, self consciousness, skin cracking when you move, 5-hour oat baths, constant creams and supplements, sun-induced eczema, teasing from other kids, constant outpatient appointments, and my personal favourite, eczema herpeticum ie coldsore infected eczema :(

“Just don’t scratch it then”

YANBU. I had eczema as a child, it was pretty bad - it kept me awake at night and was very sore. It was a reemergence as an adult that was awful though - I would wake in the night crying, with cracked abs bleeding hands, I saw the doctor multiple times who (tbh) really had no idea and just prescribed me creams.

It’s so upsetting. In fact, a lot of dermatological issues are not well understood - how many people with acne are just told to wash their faces?

YANBU OP.

I don't suffer from it but know people who do and it's horrific. It's one of those conditions, along with chronic UTIs, that a lot of people suffer from and it's not an exaggeration to say that it completely dominates and sometimes ruins their lives. It's extremely painful and debilitating; but because it's not life-threatening, it's not really taken seriously. I've often said to myself that if I ever win the lottery I'll donate a huge amount to research into both eczema and UTIs.

I've seen ho it affects my friend, who has it on hands. Especially in winter. It just goes crazy. We were all quite mind boggled when, after YEARS of medicines and prescriptions, the thing which helped her was aloe vera leaf. The actual aloe vera, no product, simply the gel from the leaf.
So now it's not painful and sometimes it's kind of gone, but obviously not gone when she uses it alongside her medication.

Exzema can be debilitating.