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 was in and out of Great Ormond Street as a child. Head to toe in cream and wet bandages every night, then the pain of peeling them off all crusty in the morning (sorry!)

I'm much better now but get really bad flare ups on my hands whenever the weather changes, washing them too much, stress, exercise...so many things! I have to get DP to do a lot of cooking prep because I cant peel raw veg or squeeze lemons.

It's so annoying the amount of people who recommend moisturizers etc, but I think unless you've had it you really don't realise that it's not 'just dry skin'

(DP is going to end up under the patio one day for telling me to 'just stop scratching!!' )

@ChaToilLeam

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.

What did the specialist give him?

Posting just to say I got confused and clicked the wrong choice in the poll, I meant to vote YANBU.

Yanbu, at the very least cracked and damaged skin leaves you vulnerable and that’s before we even start on the pain severe sufferers go through.

Eczema blighted my entire childhood horribly. I had a really bad case of it, head to toe. The ointments the GPs gave often made my skin really itchy and hot and it was impossible to resist the itching. The worst was the continuous infections I was getting, always on antibiotics.

My teenage years were a mess. I felt ugly and disgusting and was picked on constantly. At one stage I had no eyebrows because I'd scratched them off and the skin was red and weeping. I had dark scars left on my face from previous patches. The girls who picked on me often had acne (one girl had a really bad case of acne) and I couldn't understand how that was regarded as 'OK' but eczema wasn't. It was like they were still seen as 'normal girls' yet I was a freak. No matter how much you try to tell people it's not catching it's allergy related, they didn't want to know.
In my early 20s I went to a private doctor just on the off chance. He was awful. He made me sit in my underwear in his office while he looked at me and sort of laughed and said 'I bet your social life's awful'. He didn't do anything to help. I remember running to the loo afterwards and bursting into tears. Had to pay 40 quid for that. (I paid but I also wrote a letter to complain, and looking back now I'm so proud I did complain, even a little bit.)

Have so many stories. I'm in my late 30s now and I have it mostly on my hands in winter, and I'm so grateful for that. I am totally rigid with my every day moisturising routine and that has really helped with my physical (and mental) well being. The thing that helped break the eczema for me was chinese medicine. It was amazing, seeing my skin in one whole piece. I'll always recommend chinese medicine and it makes me feel really sad that it doesn't work for everybody.

YADNBU!
I have suffered with eczema too. I had a particularly bad flare up a good few years ago. It was relentless. My whole body was in agony from the weepy, crusty sores. I couldn’t bend my knees, arms or move my neck the skin was so tight and sore. I couldn’t sleep at night for the intense itch. The one time in my life that I thought about suicide was when my eczema was out of control. This is how bad it is.
People just think that we can shove some moisturiser on and we will be ok. It’s ignorant but they just don’t get it.
I became a depressed, self conscious shell of myself.

I completely ageee with you. I know several children who have eczema and it is horrendous for them. Lots of hospital admissions due to it and long stays. Being beyond uncomfortable - even wording it like that is minimising it I feel - and the pain is so bad especially with the constant strong urge to scratch.

So many people tend to not fully understand how different things impact people but a whole lot seem to give no thoughts at all about how this, in particular, can affect people.

I have numerous health issues and I feel so bad for anyone who has eczema as finding something that works is so very hard and still doesn't get rid of everything. People tend to massively underestimate the pain it causes as well.

I really hope that you can have something that eases it soon as nobody should be left going through this especially with how much it affects

It is horrible. I'm another lucky one who outgrew mine in my mid-teens, but I remember years of calamine and coal tar cream and wet wrapping with a really thick layer of 'grease' underneath. I had to wear gloves to do art so I didn't get paint in the cracks across my fingers, and I remember taking off woolly gloves and seeing fibres stuck in them. It seemed normal at the time, but I think I'd find it hard to cope with now.

Ichthopaste bandages were the thing that helped mine. That, and going abroad — it would go worse and worse through the winter, and then a fortnight in the sun and sea would practically clear it.

My brother had it as a child along with asthma, he had to have his fingers, elbows & knees wet bandaged as they cracked every time he moved. He had to have something that looked like lard in his bath, then steroid cream & a thick layer of grease before bandages were put on, thankfully he grew out of it as he got older.

@Wolfiefan he is on methotrexate. Had to come off the tablets and move onto injections because of constants nausea.

The people who ask about aveeno, child's farm or that bloody lush cream have no clue! Also the adults who stare and recoil at kids. It makes me quite murderous lol.

Op, I can sympathise. Skin conditions are horrible, I have rosacea and lichen sclerosus. The rosacea affects me daily and people do stare. But lichen sclerosus is on another level. It's slowly eating away at my ladybits and rear end. Every step an be painful, I can barely sit down.

I honestly don't think people get it as its 'just a skin condition'

Its fucking horrendous. DS has had it on and off since he was a baby. Currently the back of his knees have flared again and he is back to wearing cotton trousers to school because he cant cope with polyester school trousers.

I remember as a baby any water that used to go near his skin used to make him howl in pain. It got to the point where we used oil and kitchen roll instead of baby wipes on his arse. And oh boy does it grind my gears that the ONLY suncream he can use I have to buy from a pharmacy and its ££ and the only flipping bubble bath he can use costs £12 a tube. And they're both stupidly small tubes for the price as well.

He has a care plan at school because if flipping eczema as well. In the summer he has his own school chair with a special cushion pad on it because his skin sticks to the plastic and he has a pillowcase he sits on the carpet/hall floor on because the floor hurts his skin otherwise.

Oh and ironically childs farm is one of the worst things we can use and lush dream cream made him flare so badly he had a week off school wrapped like a mummy wearing one of DH's old shirts because he couldn't cope with any other clothes on.

I have it and I remember being in the 1st form at school (yr 7 for the modern folk) and my mum has written a note to excuse me from swimming. I was told off in front of the class, and said i was being stupid for not going swimming. The chlorine stung like hell.

If it stops you from being able to do something its a disability.

YANBU

@cookiemonster5 me too!
I’ve been on the tablets though. Always feel a bit ropy the day after I’ve taken them. It varies how much.
Can I just shout loudly about MI? Methylisoalisone (spelling?). MANY people with eczema are horribly allergic to it. I had a patch test done and it was bloody awful! I’ve had to change what I wash dishes, clothes and me in! It’s in lots of liquids. Horrid stuff. Watch for it.

@rubbishonthetelly probably a daft question if your DS has had it all his life, but have you tried aloe gel? And I mean proper aloe gel, not the shite you can buy from MLM folk. DS had eczema from 0-2ish, used to bleed and nothing we got from the doctor or pharmacy worked. Tried that and it was mostly healed over by the end of a week, hasn’t come back severe enough that it cracks open and bleeds yet, though I absolutely will not say that’s down to aloe gel because it could simply be he outgrew the worst of it. But it might be worth a try if you’ve not yet tried it?

Unfortunately eczema like asthma is something that is both very common and variable in how it affects people, but with most in the mild category meaning that we all think we know what it is. This leads to people being presumptuous that is is just a minor inconvenience.

I get both of the above in the mild category, I've not been prescribed medication for my eczema since I was a child but have met a lady who was very disabled by it, to the extent cooking was hard because gripping a knife to chop was so painful.

Sorry that you are in so much pain, and see if you can get financial support through pip if it's affecting your life to the extent it means additional costs. The lady I mentioned above did get pip awarded though took a tribunal

There was a little girl at my school with dreadful eczema over her entire body. Hands cracking and weeping pus, face, legs covered in bandages. She was incredibly frail and looked like a little old lady A severe and chronic illness.

Please tell me you haven't been dismissed and you have been referred to a dermatologist? The treatments used for psoriasis are used for severe excema too.

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.

The skin is the largest organ of your body, and to have a condition that affects it must be utterly miserable.

Listening to your uncomplaining teenage son sobbing in pain at 3am in the morning is utterly heartbreaking

Apparently mine got much better when I caught chicken pox.

I wonder how much research is done into cures?

@ChaToilLeam

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.

How did you find a good specialist? Was is NHS through your GP? Or did you have to go private? If you can recommend anyone I’d love to know please.