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. Seen my husband's eczema and it look torturous. I had no idea it could be that bad before I lived with someone who had it. Really feel for him. Giving up dairy seemed to stop it for him.

Your skin being uncomfortable can be absolutely awful. Even I feel awful when my hands are dry. So I have huge sympathy for people who have a condition around it.

@NeverDropYourMooncup Sounds like you've had an awful time too. How long were your flare ups? And is the new treatment helping?

@Snoopysimaginaryfriend

@Snoopysimaginaryfriend Sorry, please ignore that! I tried to delete the message and it somehow ended up getting posted!

As someone who has been hospitalised many times, drip etc for eczema, working from home has been a godsend, I've not needed steroid cream and or pills in the last two years.

Before diagnosis, months and months - I had great clumps of hair falling out so i looked positively motheaten.

After diagnosis from a full body flare (like every square inch of my body), it took about three months on a medium strength gel. Then, once I'd been accepted at a big Rheumatology clinic and put on the biologics pathway, I had a fairly big flare post Covid (I was developing antibodies to the first biologic so it was losing effectiveness), where the new GP prescribed strong ointments x 4, medium ointments x 4, cream x 2, lotions x2 and two bucket sized tubs of emollient ointment with instructions to use as much as I needed and to come back if I ran out 'because this must have cost you a fortune already'.

Switched to Cosentyx and it's pretty much under control with mostly OTC stuff - Psoriderm for the prickling sensation with Hibiscrub baths if I suspect any infection, the emollient ointment is cheaper off prescription, T Gel original is the only shampoo that has any positive effect upon my scalp at all - and the occasional dab of steroid.

I do miss being able to play around with different lotions, bubble baths, shower gels and the like. But in all, everything changed for the better with Cosentyx.

Another Psoriasis suffer here, and Psoriatic Arthritis, and eczema (among a few other conditions!)
Have had it 21 years now and have approx 85% coverage (that never goes into remission or anything)
I was lucky to receive methotrexate and biologics (Humira) early on, but unfortunately I react badly to every damn thing.
Light treatment - burned significantly.
PUVA - rare reaction - set off an all over body nerve reaction.
Methotrexate - throwing up constantly.
Humira - again rare reaction that has set off a permanent weakness on one side and left me with nerve problems (and memory loss and constant fatigue)
Also gone the rounds with every lotion and potion available
The reaction to the Biologics has meant that I am banned from further Biologics and all the newer treatments for Psoriasis are on the Biologic side - so I'm screwed.
So now I have funky crutches, a house full of adaptions and cupboards full of creams! (and a constant pile of skin everywhere!)

BTW don't let my experience of Methotrexate or Biologics put you off - I know plenty of people who have clear (or nearly clear) skin and have minimal side effects - I'm just the lucky one who gets the worst and rare reactions to everything!

I've have psoriasis and psoriatic arthritis for over 20 years.
I'm also on methotrexate, but avoid extended use of steroids as the skin on my legs is so thin I now have varicose eczema and horrendous surface veins.
It's ok saying not to cover it up but when you are out in public some people can be really ignorant.
I was once accosted in the street (by a school mum) and asked if I had been burnt in a fire as I was having a flare up on my lower legs (guttate psoriasis), and had gone out in cropped trousers. Also, at a holiday camp (again some years ago) people were tutting at the paddling pool that I shouldn't be aloud to accompany my small child in the water (jeans rolled up) with such a 'nasty disease'.
People are so ignorant about psoriasis and eczema, and now I always wear long trousers or maxi dresses even on the beach, although I never go in the sea anyway as salt water is a form of torture for me.
No we are not contagious or diseased, and if anyone else suggests goats milk soap I will throw it at them!

Yes, you are so right. I had a form of pustular psoriasis on my feet and it would be absolute agony to walk. I walked with a limp because of it for over 20 years, and the pain would make me cry. Nothing worked.

8 years ago I was prescribed oral hydrocortisone due to a rare pituitary problem, which I will have to take for the rest of my life. I have been free of the psoriasis for the last 8 years. I know that oral steroids aren’t great, but if I could have been offered that just as a respite I would have jumped at the chance, as living with psoriasis is relentless. They also seem to have cured my Raynauds.

Oh I forgot to say, I have a colleague who refuses to sit on a chair I have sat in in case I’ve ‘flaked’ on it. She also raised a complaint about my hygiene because clean skin doesn’t flake apparently.

fortunately my HR reminded her of the seriousness of bullying in the workplace.

I get you op. I have psoriasis. If i hear, moisturise, have you tried Aveeno, oats in your bath, t gel or unicorn tears collected by a virgin mole rat on a midsummer night one more time I will scream. I know people are trying to help but it really doesn't.
Currently I have it over my hands, arms, legs, hair, trunk front and back and in my ear canals . The skin on my elbows are cracked aNd bleeding and people look at me like I'm a leper. I'm constantly touching my hair to make sure there are no "cornflakes".

The sun did used to help little but I was then put on amiodarone for my heart. Unfortunately it makes my skin super sun sensitive. You should see the blisters on my legs from 5 min exposure. Between that and the psoriasis , I haven't needed to worry about shaving my legs although I tried once....it was a bloodbath
I need to de stress apparently

From all the responses, I feel like we should have our own support group, where we meet up and throw bottles of Aveeno at people, as violently as we can manage (depending on where we have skin problems and how easily we can throw shit).

The 'have you tried this?' brigade are indeed very well-meaning, but this ain't my first rodeo as a leper.

@neverwakeasleepingdragon I love this idea! 😀

Having watched my lovely husband struggle with psoriasis for 20 odd years, I really feel for everyone who has shared on this thread. He's done the rounds, too, of course, and has finally landed on Tremfyra, which I just checked and should be available on the NHS (we are in the US now.) This was after some unpleasant side effects from Cosentyx.

Enstilar foam as mentioned upthread is also a good topical for him.

But back to the OP, people really don't get it. I will never not want to murder his "friend" who once commented how dirty it was.

Tbh I think that a lot of people oversimplify everything now.
A bit of dry skin- I have eczema/psoriasis
A bit of tiredness- I have CFS/ME
A feeling of anxiety at appropriate times- I suffer from anxiety.

I just think its something we're going to have to live with.

Luckily, I've only ever had a few flare ups of really painful skin. It's happened a few times, and once I had a reaction to a facial scrub from Clarins. Fuck me I couldn't smile, frown, out my face on a pillow, be near anything warm bear my face, or anywhere with a breeze for a good 10+ days. My skin was cracking and bleeding.

My thoughts are with anyone with a chronic skin condition. If the (luckily) very few situations I've had are anything to judge psoriasis or eczema by, life must be pretty miserable.

I never tend to stay in support groups, but I'm up for the aveeno throwing!
Is it like axe throwing?

"Are you stressed? Stress sometimes causes it!"
THUD

I'd stick to the axe myself, for THOSE people.

*Tbh I think that a lot of people oversimplify everything now.
A bit of dry skin- I have eczema/psoriasis
A bit of tiredness- I have CFS/ME
A feeling of anxiety at appropriate times- I suffer from anxiety.

I just think its something we're going to have to live with.*

I didn't quite follow this bit of your post @Blizzardbeach - are you saying that other people minimise these conditions by falsely claiming/believing they have them, when actually they just have a bit of dry or itchy skin?

I can see that might be true of eczema, but so far I've never found anyone who misguidedly thinks they have psoriasis. I have found that lots of people think psoriasis is 'just a dry/itchy skin thing' and don't really appreciate that it's autoimmune, lifelong (even if in remission), increases likelihood of a range of other conditions, may well be affecting areas other than skin, and has a whole host of emotional/psychological implications because it can be really embarrassing to be dealing with skin flakes or hair falling out and asked whether (or treated as if) it's contagious etc.