Support thread for folks with ongoing SEVERE skin issues

[Pepa]

Do you....

• have your mood determined by the state of your skin every morning
• avoiding looking in mirrors/reflective surfaces
• have a bathroom cupboard full of miracle cures that didn't work
• compare your skin to everyone you meet
• find yourself trying to explain to doctors/specialist's how this is actually affecting your entire life and is not "just" cosmetic
• want to commit physical violence everytime someone says.."Have you not tried eating less sugar/drinking less coffee/drinking more water/eating less chocolate etc etc

If any of the above are true - this is the thread for you!!

Background on me - Long time lurker and occasional poster who has struggled with Acne and Facial Dermatitis all my life. Would really like some company as I search for a dark cave to hide in...

X-posted there!

Welcome to OhthisisJustGrape! This is definately the cave place to talk about all these things that those who are luckily enough to have "normal" skin just can't understand.....

hello :)

I have bad skin. I get pressure urticaria and have seboerrheic dermatitis (that was under control but now isn't and is all over my shoulders/neck/scalp grr) and an unidentified scaly sore rash probably related to the urticaria. I also have the worst spots on my face than I have ever had in my life (definitely feels hormonal). i am getting lots of white heads and those horrid large lumps you get under your skin.

I use nizoral for my scalp, skin (for the seb derm), use epaderm on the rest of my skin for the other rashes and nothing on my face at the moment because my skin is v sensitive and most spot creams too strong.

I gave up with the doctors a long time ago!

I am not actually that self conscious. I just get more annoyed than anything else.

Heading over to acne.org right now!

Grape, I'm with you on the rock bottom confidence and I would also be a different person if my skin cleared up. In fact, I would be ME, instead of the introverted, reclusive, head down, trying to be invisible person I am right now.

I also never talk about my skin with my DH. I can talk about anything else with him but not this, it's just too upsetting and painful for me. And I think he would feel bad because he can't fix it. But I would like him to know how I feel because sometimes I am grumpy and angry because of my skin. But I can't/don't say anything and then he thinks I'm just grumpy for no apparent reason.

PS. Hello 4madboys!

jasminerice I've had to talk to my DH about my skin just because like you say, it affects my moods so drastically. At least to say "Look I'm having difficulties dealing with this right now, please cut me some slack..."

Also whenever he would say something nice about my appearance to me, I would bite his head off because for me, my skin is so ugly how can he possible see anything else.....but talking about it is really upsetting, always ends up with me crying. Funnily enough though "talking" about it on this thread is actually helping me.......

So glad I'm not alone (although not glad anyone else feels as bad as I do :()

My DH made a comment the other day that has really got me thinking. MIL was talking about one of BIL's children who has broken out in typical teenage acne. Immediately, DH said 'oh, it'll be down to all the crap he eats'. MIL tried to defend him by saying 'oh no, I think it's just a teenage thing...' but DH was adamant it was down to diet alone (nephew is a little overweight etc).

It really upset me as I'm wondering if that's what DH thinks about me? I remember having a breakout just after my PCOS diagnosis and I said to DH 'that's another thing I have to thank having PCOS for' and he didn't seem to believe it could've been down to that. Mind you, we have other relationship issues at the moment so I don't feel confident talking about anything with him right now, let alone the state of my skin.

Oh to be able to wear my hair up off my face and be able to feel comfortable with who I am. Bloody acne :)

Pepa, I have recently managed to talk to DH a bit more, and told him my skin makes me feel very depressed. I haven't told him it makes me grumpy and angry too, will have to try.

And I can totally relate to biting his head off if he tried to say something nice about my appearance. Or would just refuse to believe him and think he was just saying it.

Grape, poor you, I really hope your DH does not think your acne is your fault.

I've totally fallen out with my MIL because of my eczema. She was obviously mortified when my skin flared up after I had DD. She was very worried about what her friends would say, what the neighbours would think. She was ashamed and embarressed about me. It never occurred to her that my skin made me feel bad about myself. Only the effect it had on her. Even DH a few years ago told me I should think about how it feels for him to walk around outside and see that nobody else had a condition as severe as mine. I still haven't forgiven him for that comment and I don't think I ever will.

What a horrible thing for him to say jasmine.

I am 'lucky' (wrong word but you know what I mean!) that dh has severe eczema so he is v understanding of my skin issues.

I HATE the spots though. Feels like cruel revenge that I made it through my teenage years with no spots to then suffer so badly now! Also when the seb derm was really bad my hair fell out a lot - people at work used to comment all the time as the hair was all over my clothes and the chairs I sat it. That used to really worry me - though I would eat up bald!

Eat up?! Thought I would end up bald!

i have seborrheic dematitis and very oily skin (like an oil slick as another poster said) and acne. i have been buying roaccutane from a dermatologist for over 10 years. i have to get pregnancy tests before my appointment and get blood tests every year. i am lucky, i have had no side effects, i.e liver or kidney problems. i tried to get my gp surgery to prescribe it for me but they are too lazy and will not do anything that requires work on their part, they told me to continue organising this care myself. they will, however, chase you for smear tests and stuff that they get paid for.

i normally take roaccutane for about 8 months a year and give myself a rest from December to March. oily skin in the summer is terrible. at the moment my face, neck, back and chest are sticky with oil and i have spots all over.

Grape and Jasmine, i would need a LOT of begging to consider forgiving remarks like that. Completely unacceptable, your P should be the person who thinks your better than a page 3 model at all times.

I guess i'm lucky that, while i don't think i'm at all attractive, my depression and the state of my face aren't inextricably linked

Creighton, if you're in the uk, change doctor's now. My (new because the okd ones were too used to elderly peoples problems) gp took one look at me and prescribed tetralysal and dalacin. I'll get roaccutane and a dermatologist referral if we can be sure it won't trigger the depression. So it's definitely your entitlement under the nhs!!

Purple, yes I agree with you. In his defence, it was very out of character for DH to have said such a nasty thing to me, it was during a very stressful time in our lives. But still, even if he was stressed, that was a totally unacceptable comment to make. His mother, my MIL, has been similarly nasty, and I have cut her out of my life, haven't seen her for years. DH is much much more considerate and sensetive to my feelings these days, he tells me he thinks I'm gorgeous, but I think he means my body, not my face . Actually I think I'll ask him outright tonight, if he thinks my face is gorgeous.

I think this thread has given me a lot of confidence in talking about my skin, thankyou everyone for sharing your feelings and experiences.

Think of what percentage of your body is taken up by your face. Maybe 5%. Then think of all the elements that make a face - skin, eyes, nose, mouth, shape, expression...

Can anyone good at maths please tell me how much one sixth of 5% is??

Anyhow, your dh finding the skin on your face unattractive means that he finds 1% of you unattractive - and 99% hot as fuck

Purple, yes, but to me that 1% is the most important part.

I grew up being made to feel ashamed of my skin and was told I was inferior to other people (ie my sisters) because I had eczema and they did not. My parents never made me feel I was as good as anyone else and that it wasn't my fault I had this condition. In fact I was made to think the opposite.

And DH seems to have grown up with a mother with a similar attitude. I believed it myself until recently. I felt people wouldn't want to be friends with me because of my skin.

Jasinerice, Grape and Foxs and for all of you that you've had to experience people being so insensitive.

The problem is even if the person apologises and you both "move on" it stays in your head right - to be thought about when you are having a tough time. Wish there was a way of deleting unwanted memories from our brains (although I seem to have no problem "deleting" things like where my car keys are !)

On a slightly different note, my youngest DD (2) has recently started to count my spots she thinks it's fun but you can imagine how that makes me feel when I've just spent a silly amount of time getting ready for work and applying "camouflage " and I as I go to give her a kiss goodbye she starts counting all my spots, out loud, infront of everyone...don't know whether to laugh or cry....(well inside I'm definately crying )

Purple thank-you, what you said actually made alot of sense and I'm really going to try to focus on being realistic about how much of "me" is actually impacted by the skin issues. In my head it effects EVERYTHING so I guess I have to start there and try to work on having more positive thoughts about myself....its not going to be easy though I've had 20+ years of thinking this way....

thanks for the advice PP. even if it is only a small part of your total skin it is the most important. it is not good to go to a doctor to ask for help and have him wiping imaginary grease from his face when looking at you. lots of people do this if i don't use roaccutane or cover up with matt makeup (boots no.7). then he says there is nothing he can do.

people will also tell you that you won't have a wrinkle when you are in your 70s. who give a flying f... about their 70s? it is important to look good, not ridiculous when you are in your teens -30s.

you know when you go to the loos in a club or restaurant and all the other women spend 10 minutes looking at themselves? i wash my hands and leave, there is nothing to look at.

Pepa, thankyou for your kind words. And yes, you're right, once something nasty has been said, it does get dragged up when we have an argument about something else. It was totally below the belt, overstepping the mark, and being under stress is no excuse to hurt someone you supposedly love so much in the worst possible way. DH knows and accepts all this.

And I can so relate to DC's telling you the unvarnished truth, unsolicited. DS is always telling me that I look very very old. Once I told him that it wasn't a very nice thing to say. The poor boy looked very confused and said "But it's true". To which I had no reply. He's only 5, he was just saying what he saw. So I can relate to the crying inside.

Creighton I can relate to you as well. My eczema is very bad around my mouth. And often when people will rub their face around their mouth when talking to me as if they have imaginary eczema around their mouth too. I hate it when I see people doing this. It really really upsets me. Your doctor sounds horrible. Mine is not much better. I had a breakdown just over a year ago. I was suicidal due to a combination of many things, including the state of my skin. My doctor cheerfully told me that there was nothing she could do about my skin but she could definately help with my depression. Errr, actually, my depression is due to the state of my skin, which any perceptive doctor surely would pick up on. Most doctors are utterly clueless in my experience, I have largely given up on them.

And yes, in the ladies loos, I wash my hands, make sure I DO NOT catch sight of myself in the mirror, and leave.

This thread has made me feel much less alone with my problems. It's so nice to be able to talk to people who understand how having a horrible, disfiguring skin condition can make you feel.

I've had to endure being bullied and called horrible names due to my eczema. Worst of all, the bullies were my own sisters, not anyone at school, when I was a lot younger. I've lost friends because of it I'm sure. I had many years when I was completely clear of eczema, including my face, and then when it flared up, a number of 'friends' seemed to disappear. I know I'm better off without ' friends' like that, but it still hurts to be treated like that.

If I was travelling on the tube I would always hide behind a book or newspaper. I hated socialising, felt awful if I did go to a social event, but otoh felt awful if I couldn't face it and didn't go.

I hate all the rude people who openly stare in the street and the even ruder and nastier people who not only stare but make nasty comments about my skin under their breath, but so I can still hear them (a nasty horrible man I used to work with did this). I have had people openly making horrible nasty comments and gestures at me about my skin.

I wish I had had the self esteem and self confidence to put all the nasty and thoughtless people I have encountered in their place. But I grew up feeling I was inferior because of my skin and almost thought at the time I deserved other people's nasty hurtful comments. I even had a dinner lady at school once make a nasty comment to me about my skin, saying I wouldn't get a boyfriend because of it.

I just don't understand why people are so horrible. I wouldn't dream of being nasty to someone who is so obviously suffering. It's depressing thinking about just how many nasty people I have encountered over the years.

My eczema is like a disability. It is disabling, often physically because it can often be very sore and painful and definately psychologically, because it has destroyed my self esteem and self confidence, and also because of the way other people have treated me because of it, starting with my own family. (I don't see them anymore thankfully, but that story belongs on another thread).

PP, thankyou, I need a hug. I feel like I have a lot of bottled up emotions in connection with my skin and the horrible experiences I've had because of it. I've never talked about any of it before, ever. It feels really good to be able to get it all off my chest and not be alone with it.

My family caused the most hurt I think. My sisters bullied me horribly about my skin, called me names. If I hear someone say a word they used a lot, I immediately tense up and feel scared and anxious. I think I have PTSD because of their bullying. My mother didn't stop them. I didn't tell her my sisters were bullying me, not sure why, probably because I knew she wouldn't do anything. My sisters were her favourites. She just ignored me mostly.

My dad told me I would have to marry anyone who would have me. But my sisters could be far more choosy, because they didn't have eczema and were pretty.

Sounds like you need counselling for the childhood trauma as much as treatment for the eczema. That's appalling

PP, I think you're right. I'm glad you said it because I was thinking the same but wasn't sure. I've had some counselling already about my family as they were abusive generally. But I never talked specifically about the bullying and comments about my skin. It was just too painful and traumatic to talk about.

For some reason I'm feeling more able to talk about my skin a but more recently. Not sure why but it's good anyway. It was like a taboo subject in my family. Never mentioned or talked about openly. As if it was something shameful and embarrassing.

And thankyou for the hug, I very much appreciate it.

Jasminerice - I am shocked that the people who should have been protecting you and building up your confidence treated you that way. To belittle a child is one of the damaging things I think parents can do and to do it over something the child has no control of is just mean....so definately from me too!

I secone PP's suggestion about counselling and talking about your skin. The very fact that it was so painful is the reason I think you need to go there again and see if you can find a way to put it away in a place where it cannot keep hurting you....the only people who should be shamed and embarrased by all of this is your family, not you.