To say some people don’t understand how bad psoriasis and eczema is?

[DanceBecauseYouCan]

Fully prepared to be told I’m being unreasonable (and I genuinely mean that!) I’m having a particularly nasty psoriasis flare up on my head right now and I’m in a bad mood because of it so maybe I’m just being unreasonable but I just wanted to get this off my chest.

I feel like not everyone understands how bad psoriasis (and eczema) can be. I’ve noticed a lot of people saying they have eczema or psoriasis when they just have a bit of dry skin, and I think most people consider the conditions to just be dry or slightly irritated skin when actually it’s awful (I know it’s a spectrum and some people have it worse than others, but not every bit of dry skin is a condition, sometimes it’s just normal). I don’t have eczema so can’t talk about that but psoriasis is an autoimmune condition and not just a reaction to soap or shampoo like some people seem to think.

I don’t talk about it or bring it up but it’s obvious and red raw at times so sometimes it does come up in conversation. The number of people that are like ‘’omg I have horrific psoriasis too, have you tried a product called t gel or Sudocream? Make sure you moisturise everyday!!!’’

I know people are trying to be helpful and sometimes simple OTC products do help, but it’s a bit frustrating after a while to have people claiming their tiny bit of dry skin is psoriasis or eczema when actually it’s just typical dry skin that’s completely normal. Im on very strong topical steroids and am under dermatology, I think it’s a bit beyond e45 and I know by now that I need to moisturise everyday!

I guess a similar comparison is probably people with ME or chronic fatigue syndrome- i have a friend with this who gets so frustrated with people telling her they have it too because they’re always so tired and reminding her of the importance to get at least 8 hours of sleep 🙄 I guess it’s sort of like that!

I know I have no way of knowing if their dry skin is just them on a good day and I’m probably not explaining this well, but does anyone else with psoriasis (or eczema) feel like this?

I get it. When my eczema is really bad I can barely move my arms and wrists as the pain is so bad. It gets horribly infected and I have to have back to back courses of antibiotics until it clears. Also I get it very badly on my face and neck which means I am very self concious about it as that can't be hidden.

Like you say the number of people (Dr's included) who say you must moisturise more, like I don't do that all the time already! Or friends when I have cancelled plans because I can't move without my skin splitting and weeping and it is agony who get a bit shirty and say it can be that bad, it's only skin. Yes, the skin that is over my ENTIRE body!

So yes I don't think people do understand it unless they have it. They might try, but I really don't think you can understand how painful and restrictive skin disorders can be until they have affected you.

I have a really rare type of psoriasis ( Palmer planer pustulosis) and it’s physically disabling me. I had 10 years flare free after puva treatment and I’m currently a year into a bad flare waiting for puva.
its literally agony, walking causes it to fissure and bleed, using my hands for anything and they crack and are agony.

you are absolutely not being unreasonable. People don’t get it.

Agreed. My worst flare was when I was 95% covered and it was sore and bleeding all over my body. Couldn't sleep because of the pain. Couldn't leave the house at all because I couldn't wear any clothes. I'm currently about 30% covered after changing medications and it's pretty grim although more annoying than anything else.

i have seen psoriasis / eczema on friends/family and seen how bad it can be.

My own skin issues (itchiness, etc) pales in comparison, so YANBU.

Eczema here.

At one point, the doctors were talking about putting me in a wheelchair because I had no skin on my feet, and it wasn't growing back.

The problem is, that severe eczema makes us feel ugly and gross and ashamed, so we do our best to hide it. So people who don't have it don't realise just how serious it can get. We've sort of done this to ourselves by hiding it so well.

Eczema at its worst is actually a disability because it ruins your life, but I'd say most lay people think it's just a bit of dry skin. Unless you have eczema or a very close loved one has eczema, you just don't see how awful the condition can be.

There's the blood... the pus... the infections... the cracked skin... the pain... the special creams, the hospital outpatient treatment... even inpatient treatment sometimes! Avoiding triggers... and having flare-ups anyway, because eczema can be triggered by very specific things and also by nothing in particular... It can be awful. Just awful.

I imagine your experiences of psoriasis are similarly frustrating, even though it's a different condition altogether.

Psoriasis here - my particular favourite treatment was having to put dermatology prescribed emollient (can't recall name at the moment) over body and then cover limbs with tubi grips before bed - I was a hot wife strongly smelling cos playing Egyptian mummy

It’s definitely under appreciated for how bad it can be. I grew out of my childhood eczema, thankfully, but as an adult have developed scaly palms which crack and bleed. Doesn’t matter how much moisturiser I put on, it doesn’t go away magically. At least it’s only the palms, but it’s still endlessly painful.

Maybe they have it in places covered by their clothes...?

Eczema here, aggravated by stress as well as allergens. I could barely hold a pen at exam time. It was so painful.
It’s been especially bad this year and I don’t know why, but yes it is infuriating when I have been told to ‘ use more cream’ or check my soap products.
I am almost 60 - when does it get better?
Sorry to everyone on this thread who is suffering - it sucks.

My daughter has severe eczema if she eats eggs and wheat. The gp told me that wasn't possible and prescribed cream after cream. Told me I was misguided to think food allergens caused eczema. I cut both out and it disappeared in a week. I fed this back to the gp and I basically for an eye roll.

I have severe psoriasis with psoriasic arthritis. Sometimes I feel like I’m rotting. I get so fed up of people sending me links to bath salts etc.

my son has it too, even worse than me. After 15 years of agony he’s being given phototherapy at the hospital 3 times a week. It seems to be working. I can’t afford to take 3 days a week from work though.

YANBU

I'm 61 and I've had psoriasis since I was 6months old. It's excruciating, not just physically but emotionally too. I have never felt like anyone really understands, even my lovely DH of 40yrs.

I've spent years of my life as an hospital inpatient, I've been waxed, mummified, purple stained, smelly, skin flakes everywhere I go. I've tried every treatment under the sun (including the sun) I've had so many treatments I can't even begin to remember them all. It's soul destroying really. About 75% of my body, including my face is covered in the bloody stuff. It's painful, itchy and embarrassing. And it stops me living my life as full as I want to.

My teens were a nightmare and I was over 30 before I was confident enough to go sleeveless anywhere. I always wear white or light coloured tops so the flakes can't be seen on my clothes. Gradually over the years I've learned to cope with it, and with well meaning comments from people 'oh have you tried xxx' etc and quite a lot of nasty comments along the way. I'm pretty sure that I've been turned down for jobs because of it.

If people bother to ask I tell them it's the things they can't see that are the most distressing. The sleepless nights of scratching myself raw, the mortification when you are at someone else's house or in their car and you leave a trail of skin behind, the (perceived) looks of disgust if I dare to swim. Even people who love and care about me can sometimes be hurtful because they 'don't see it' anymore and sometimes it can feel like my feelings are invisible.

Of course most of this stuff is our own feelings about it. I'm pretty sure most people don't care if I'm in a swimming costume or strapped dress.

Sorry, obviously I needed to get all that off my chest! I'm on methotrexate now for rheumatoid arthritis and one of the effects is reasonably clear skin as long as I use it consistently, although I too am currently having a flare up.

I'm a happy, cup half full person so I've learned to deal with it on the whole but I empathise with you and know exactly how you feel.

I get it. I won’t do it, but that scene in Game of Thrones where Sam is curing Jorah of greyscale aired when I was in the middle of a huge fully body allergic eczema flare. My first thought was, maybe he could come do that for me. It impacts every minute of your life and limits your ability to function in the world. It’s not just a little rash. It can and does qualify as a disability. I’m just lucky I have a job that can still be done with simple accommodations.

I feel lucky in that I only have small patches. I have psoriasis on my neck which flares up occasionally but it goes into the hair line.

I have eczema on my eyelids though and I cannot get anything topical prescribed as its too close to the eye. Stuck with using emollient cream twice or three times a day.

I agree I’ve had awful eczema in the past and was hospitalised a couple of times. I’m very lucky that it has cleared up now.

I also have a condition that causes large pustules that I mostly get on my palms and wrists and they are so painful, it’s a small area but very debilitating. I go to the GP surgery twice a week to see the nurse to get them bandaged up so I can function at all. I get fed up when people ask me ‘have you had your carpel tunnels done’? Or are you boxing’? I know they don’t really mean anything by it but it p***s me off.

feel better for getting that off my chest.

My mum has psoriatic arthritis and I remember all the different treatments she tried that didn’t work.

I never had skin problems but a few weeks ago developed eczema on my feet, hands and all up my forearms. Apparently the eczema on my hands and feet is pompholyx which blisters. The first GP I managed to see via a video appointment told me to get some hydrocortisone and moisturise. The blisters burst and spread all over one foot in particular so my skin cracked and became infected. I’m on three different steroid creams and antibiotics now. I had to work from home because I couldn’t put shoes on. I have no idea what has caused the eczema but it is truly awful

Just put in my repeat psoriasis prescription today. 2 types of steroids for scalp, 1 type for ears, heavy duty enstilar foam for body, capasal shampoo and giant bottle of hydromol. Every single day. It's exhausting. I'm currently waiting dermatology referral for immunosuppressive drugs - annoyingly it's taken 3 years just to get the appointment to even discuss it due to moving, and doctors wanting to try typical treatments first etc etc

I'm so sorry for you. You've just described my lovely SiL...she's covered head to toe. Has massive plaques of scales on her back, always covers up no matter how hot, has max'd out her PUVA treatments for life and her only option now is methotrexate. She can't bring herself to take it because of the awful side effects. Her bathing routine takes 90 minutes most days, slathering on whatever ointment helps.

I'm always looking out for treatment options for her, she's grateful that I try but nothing seems to improve it sadly. I feel so sorry for her.

I'm with you OP. It's impossible for some people to comprehend the pain and discomfort.
With regards to your scalp, have you tried this?
www.polytar.co.uk/about-polytar/polytar-4-shampoo

I agree, I was diagnosed over 20 years ago. I’ve never had a flare up, I’ve had it constantly for all those years, each year adding new patches to my collection. Scalp, eyebrows, eyelashes, jawline, armpits, arms, fingernails, bikini line, thighs, shins and toenails!

Currently deciding whether to go private as my GP just isn’t interested. She just said “well you know it’s chronic don’t you.” I have 15% of my skin covered in horrible red itchy patches.

Some idiot at work even asked if I’d burnt myself 😡

Totally agree. I do think it's the same with many conditions though - people find it hard to understand the severity, effects and fatigue of any kind term condition unless they suffer with it themselves.

I have chronic migraine which can leave me with attacks covering up to 27 days a month at worst. It's fucking awful. And people are full of tropes - "do you drink enough water", "have you tried aspirin / paracetamol / tiger balm / organic lavender oil from this specific farm in rural Italy / daith piercings / pinching your thumb web / cold compress / hot compress / just not thinking about it... Because my auntie's cousin's dog does X and their migraine is cured!". Telling them I'm under neurology tends to get them to fuck off.

I don't care if it's well intended, the kinds of things we've all been told about our own conditions are often incredibly patronising and minimising what we are going through.

I have eczema on and off on my neck and chest which seems to flare at odd times. It’s horrible, itchy and doesn’t seem to respond much to treatments. The itch is the absolute worst when it’s bad, it’s dementing. Seems to be related to stress.

I have had worse things though - went through a year of awful stomach trouble and nausea, that was far worse. Also suffer on and off from Burning Mouth Syndrome, and that’s not fun either.

So yes, it’s total shit, but in the grand scheme of things I’ve had worse.

I saw the late Dennis Potter in a restaurant about ten years before his death. Something I will never forget was his skin condition.

It’s hard, like most things unless a person actually experiences something themselves they will never fully understand it.

I knew both could be bad but not until one of my DDs got eczema did I fully understand the extent. Since she developed it at 18 months old we’ve not had a bed set not stained with blood from her scratching, most of her clothes don’t last long because of the blood, the pain it causes her is horrible. I’ve seen the neighbours shaking their heads through windows because of her screaming, especially recently in this hot weather, she’s five and in agony with it. They probably think she’s a brat having a tantrum but she’s in pain and hates creams, obviously we can’t put steroids on open wounds and she hates the sensation of moisturiser so it’s a battle to treat. It was horrible when it was all over her face, thankfully it’s better these days on her face as she’s now understanding how she looks.

Also any skin condition is considered an autoimmune condition, well according to my DDs dermatologist so I’m assuming it’s true.

"Have you tried..."
YES! If it exists, I've tried it.
Apparently mine is classed as under control. I have to smother myself in steroids if I don't want to cover my desk at work in blood though and I'm concerned about over use ☹️