Why Me?..

[Gabbyeva54]

Does anyone else think that sometimes maybe life isn't worth living for. Everyday i go through the same thing over and over again, Sleep, school, put on lotion, sleep etc. I hate not being really pretty like the other girls at school and wearing slutty shorts and tank tops showing off their body's, at the beach i hate it even more as i could never wear a bikini, people would think i had some crazy weird contagious disease. I can never talk to anyone about it, cause it would be just really awkward... I have a really rare skin disorder called Netherton Syndrone, and from what i have read/ seen on the internet most cases are more sever than mine. But i would love to now if anyone has any suggestions to help out with my disorder...

[eiznil]

Hi there,

Can I just start by saying, 'beauty is only skin deep'. It's far more important what's 'on the inside' and not whether you're Cheryl Cole, (or whoever you admire). I couldn't help but notice you'd used the phrase 'slutty shorts'. I wonder why you'd even want to admit to wanting to wear these? I realise I probably sound very old fashioned here, and I guess I am quite a lot older than yourself, with you talking about school. I left many years ago! Is it so you 'fit in'? Try being like me and going the opposite, it's more fun 'being different' and making a statement like this. WE ARE ALL UNIQUE AND I LIKE BEING THIS WAY!

I do understand how you feel about the same routine day in day out. It is hard and gets frustrating and tiresome at times. I can't say i know what your condition is, as I've never actually heard of it, but I can understand what you say when you talk of having the same routine etc. I know it's not the same, but the day I started High School, I started with Atopic Eczema and spent years trying to get the right medication to help ease my symptoms. I was made to feel like a 'freak'. As like you say, others assume your skin condition is contageous. Then a few years ago my symptoms came back with avengeance and it took 3 years of going back and forth to my GP, Dermatologist and Nurse Specialist til we found something that has been like a 'miracle'. I begged them all to let me try the med I am now on from the beginning, but they had to 'follow guidelines etc'. It's sickening the red tape that is around. I was affected externally AND internally from head to foot with it. The 'miracle' tablet cleared it up almost completely within 3 days. I am still on the 'miracle' tablet and am almost loathe to hear I may need to come off it. The tablet has worked wonders for me, but has also caused a bit of an issue for me, as I have gained some weight since starting it.

You ask if anyone has any suggestions to help you. Have you spoken to the Dermatologist and GP about how you feel and been assured they are doing all they can to help you to get the meds etc you need to help ease your symptoms?

I hope you get something to help you, and soon. But PLEASE remember, you have to like yourself and it doesn't really matter what others that don't know you think. The people that matter to you and the ones that care for you, know who you are and just remember that.

Best wishes

Linzie x

[Gabbyeva54 Volunteer in reply to eiznil]

Thanks :). That was what I really needed to hear. Also I have seen other people post things about the Miracle Tablet but what is it?

[eiznil in reply to Gabbyeva54]

Glad I could help, if only even a wee bit:-).

In my case, the 'Miracle Tablet', is ''Azathioprine'. It's an 'Immune Suppressing drug. Look it up on the web and it will tell you more about it than I could possibly tell you. Not sure if it wou;d work for your condition, but it is worth asking.

Lx'

[psoriasisscalp in reply to Gabbyeva54]

I spent years looking down at my feet because looking up meant I could see people staring, whispering and even pointing. I am an older lady so I can only pass on my experience to you. I wouldn't dare enjoy life and hated myself but after years of feeling and thinking this way, I suddenly started looking ahead, making myself a life plan and generally getting on with it. I have Psoriasis it is plain to see, but people who stare are not necessarily rude, they are ignorant or surprised or both but that's not my problem, it's theirs. I stare ahead these days, stare past the looks they don't matter to me, I matter to me, what I do with the rest of my life matters to me and I've wasted too much time 'wishing' for change, a cure. A friend of mine (she's a Dwarf) has really enriched my life and inspired me, says that if we looked at life from other people's perspective we would be 'other' people and sometimes that is more upsetting than our own condition! She once told me that when she was out in a group of people who also had Dwarfism, she didn't notice the people around here then! So we only feel self conscience when we see ourselves as alone in a crowd instead of a valuable member of a group. My advice to you is to read as much as you can about your condition, the British Skin Foundation will no doubt post all latest research and members are here when you need them to remind you you're not alone, chin up, you're amazing! Sally Anne

[Cherry1303]

Hi,

Sometimes asking ourselves "why me?" never gives us the answer we are looking for or gives us the comfort we crave. What we are actually asking is how can we overcome this nightmare we face of ourselves day in and day out? We cry and we get annoyed as we look on and see others that appear to have perfect skin, and yes we say, but why can't this be us?

I am now in my forties, and like you, I spent my school years feeling just like you do. I was inwardly wishing I could be like others, wearing shorts and pretty dresses, thinking that there was no place in this world for my skin condition, so why am I here living in it?"

As time went on in life, I started to refocus and started to look for the things that I was really good at and had a real talent for, and with these tools looked at how I could improve on what I could change, and work tirelessly at that. I worked on improving my diet, my physical fitness, my wardrobe to fit what could hide my legs and hair, my mental outlook etc.

Having a skin condition such as Icthyosis also looked hideous on my legs, and this also affected my hair, leaving bald patches and hair loss. My next fear was how was a boyfriend ever going to accept me looking this way? What I have learned is people will only see us how we see ourselves. I am not saying we have to show what we have to the world, if this is going to draw the "wrong" attention to ourselves. I am merely saying that we choose our life path, and we must find a way of how we control what we can so that eventually, when the change comes, and it will come, that you will be ready to embrace it and take it to another level.

I can say this confidently, because it has happened to me, and for some it may seem too late in age, but through diet and health and focusing on improving things I could, I am now walking around in short shorts and dresses, because 30 years on from school years, my condition has abated due to the years of conditioning my mind and constantly remaining hopeful that one day it will stop punishing me, and it has.

Why I say remain hopeful and work on things that make you feel good, is that maybe, just maybe, you may find that someone in the world has worked on a cure or found something that will improve your condition. When you wake up everyday, think of one thing that you can do good for yourself or say something good to someone that will have you thinking or feeling different for that moment. This will start to develop you to looking at yourself in a different light. Hard work I know, but you must start from somewhere x

PS: If I find anything about your condition from professionals I will be sure to point you in their direction.

[chandora]

I can fully symathise with the way you're feeling as I often feel like that too. apart from other problems in my life, I suffer with eczema and at the moment it is really bad on my face and my neck - the two places that are hard to cover. But I agree with the first two comments that were left for you that beauty is in the eye of the beholder and beauty is skin deep. It takes a better person to care about other people and to be beautiful on the inside. If anyone makes you feel uncomfortable, they are not worth knowing. Real friends will accept you just as you are and will automatically see your inner beauty. We all have flaws whether it be our looks on the outside or for some people, a selfish personality on the inside. I have a very low opinion of the way I look because of my eczema but I have many friends who are really kind and are proud to be my friend because of my personality. I go out of my way to look after my friends and I am always here for them when times get rough. I pride myself on being a good listener.

I am sorry I have not heard of your condition so I am not sure where the condiditon is on your body but we are lucky these days that fashions cater for any taste and size so we can cover up if we need to. Personally, I am glad that scarves are fashionable to cover up my neck.

Just remember that nothing lasts forever and in 5 years time will this matter in the same way as it does now. By then, you will be in a different place and as time goes on, you will grow stronger and this will make you a really good person.

Be brave and remember you are a special person and you belong in this world as much as the next person.

[Elsa-Grace]

Hii,

I was diagnosed with a lifelong skin lymphoma a couple of years, which has caused me similar problems to you it seems! I am a teenage girl who would love to wear bikinis, shorts and short dresses/skirts but don't feel confident enough because of what my skin looks like. My condition is also very rare, with hardly any cases existing and those that do are much older people! Which makes it harder for me to explain to people about my condition, as people have such little knowledge - further making me not wanting to show my skin!

I am looking into skin camoflauge which will perhaps help me with my confidence, I suggest you do the same

Being in a similar position I know how hard it is, and however strong I am I also find myself asking 'why me' and am jealous of other girls with flawless skin. But life is what you make of it I guess, so when I'm sad I just remember all the good things I have in my life

[spot]

i'm sory to hear this I have hidradenitus supp on my body it's probably similar but ey kid least it's not cancer and tou are completely healty otherwise - thnking of you from spot

[Melmo]

Hi, both myself and my 19 month old daughter have EHK Ichthyosis, so I know a little bit about Netherton's syndrome. I also run Friends of Ichthyosis and would be more than happy to talk to you if ever you feel you need someone to talk to who has the same/similar condition. Please feel free to contact me hun, hope you are keeping well at the moment x

[Npainbuthopeful]

BLESS US ALL

[piquad]

Love all the comments you have all posted its great to see that we are all for one and one for all. nobody has to suffer in silence.

Good luck all. P