The root of my problems

This topic really delves into the root cause of my lack of self esteem and my loneliness. I fully understand that there are many people out there who live with far worse physical ailments than I do, and I do feel a tinge of guilt over how much trouble and self pity my condition causes me, however the fact is that it does bother me in at a very deep level and it is a problem that I struggle to deal with.

I was born with a genetic skin condition science refers to as a type of Epidermolytic Hyperkeratosis Ichthyosis
. A short and generalized term for it is Ichthyosis. In my particular case my skin cells are produced at about 10x the normal rate. This basically deforms my skin and causes many of its functions to not work as they should. As a result my skin builds up rough patches all over my body, which is popularly described as “fish scales”. My skin is almost completely unable to sustain moisture, which results in extreme dryness, causing the skin to become very hard, flaky, and cracked. To help avoid this problem I must put some sort of moisturizer on all over my body in order to keep the skin soft, comfortable, and somewhat “normal’ in appearance. The particular moisturizer I use is Vaseline due to its quantity, cheaper price, and it stays on the skin for an extended period of time. So basically my skin goes from being either very greasy and sticky from the Vaseline or very dry and rough from my skins lack of moisture.
(Vaseline is not the recommended creme for my skin, however the best types are rather expensive and/or do not stay in the skin for very long, which would result in me having to replace it on my skin multiple times per day, which I have no interest in)


My skin is also very tender and vulnerable. The top layers of skin slides off if a certain amount of force is applied, which reveals a raw, red layer of skin that then needs to be protected from bacteria and touch. My skin does not have workable sweat glands which leaves my body without a way to cool itself. If left in very hot conditions for too long I will suffer a stroke much faster than normal people would.

My skin also traps bacteria under its layers which results in unavoidable body odor. Because the problem lies mostly under my skin, regular soaps and deodorants do not help me much. Only taking internal ant-bacterial medication truly helps bring down the body odor that my skin produces. Although it is not very bad when controlled, it is still noticeable at times if someone is close to me.

(Here is a picture on the internet that I found which closely resembles what my hands look like if they were unmoisturized. The hands do tend to be alittle worse, so the rest of my skin, although similar, would not be as bad as the hands. Also please note that some may find this picture alittle disturbing, which is why I didn’t place it directly in the thread. Link to Picture )


That is a very quick run through of my skin disease. It is all this combined (plus other issues) that causes me so much trouble with other people and to have such low self esteem. As I’ve mentioned in other posts, I’m 20 and never had a girlfriend. I’ve never been able to form a close relationship with a female my age and I cant even remember a time a girl ever actually touched my bare skin.

Because my skin has such an abnormal look, touch, and smell to it, I’ve naturally had to deal with many people who would hate nothing more than to have to stand within a close radius of me. Because I’ve seen so many girls who are frankly disgusted by my condition, I just don’t have the confidence within me to approach girls or even attempt to ask one out on a date.

Eventually even getting a date would present new challenges to overcome. My skin is in a condition where it will never feel normal in any way. My partner would never be able to touch any area of my skin without feeling the greasy, rough, scales. Many of my family members avoid touching my skin, and to this day I absolutely hate having to touch my own skin.

Nobody knows how I truly feel about my disease. To everyone I act as if I am content with myself and have no worries, however It is constantly eating away at me. I take no medication and I do not take any drugs as a way to ‘cope’. I personally feel as If I can make do without any of that, however my loneliness and anxiety over dealing with other people seriously impacts my college performance and my willingness to do the things I need to do.

I’m sorry this is so long, and I don’t really know what I’m looking to get out of posting this in the forums, but I’ve never described my feelings on this matter to anyone and so maybe I just felt like getting it out of me in a fairly anonymous way. Feel free to post any questions or comments, but if you don’t know how to respond then don’t worry about it.

And if you actually made it through this entire thing then congratulations! I have no prizes though

Well I'm glad you were able to get that out...to me it always feel like a pressure lifts from my shoulders when I confess something big or reveal a secret to someone...even if it is anonymously! So amidst everything you're dealing with, I hope that it did the same for you.

I honestly can't say that I know what it's like to deal with a condition like yours. I guess I got a different number in life roulette wheel or something. I don't know too much about Icthyosis (although I can tell you why it's called that)...you say it's genetic? So I imagine that there isn't really any medication that could fix it or something, right? Heh you probably would have already jumped at the chance if that were the case.

I won't bog you down with empty platitudes like, "Maybe you're learning patience from this," or something cheesy like that. All I can say is that I think it's awesome that you haven't turned to drugs or anything to try and drown out your feelings and problems. That takes someone very strong, and I say it's laudible (sp?) no matter what your outside appearance.

----Steve

P.S. If it makes you feel any better, the middle toe on my left foot is abnormally long...and I can pop my arm out of socket at will. Lol but maybe those don't count? I dunno.

hmn I wonder if there is a society or group of people who suffer fromt he same disorder that you could join? You could go to meet-ups...that may help you

My disability is so rare that I dont have a society, but other disabilities have societies for socializing and support...

I admit i would like to offer some comforting words, like despite how we look there are people who will care and accept us as we are, flawed or not. Too bad few people like this exsist or are rare, however they still do. You really are a strong person to deal with all this discomfort and doubt, you've managed very well. I thought my ezema was bad when it reached my elbows from my hands and spend alot of time avoiding another occurance (it hurts), now i'm sorry for my selfishness. Good luck and i'm glad you shared.

Badjedidude said:

P.S. If it makes you feel any better, the middle toe on my left foot is abnormally long...and I can pop my arm out of socket at will. Lol but maybe those don't count? I dunno.

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lol I'm glad I'm not that odd.

But thanks for the reply Steve. To my knowledge there is a medication that can help my skin to an extent, however it has some risky side effects and is only temporary so I've chosen not to bother with it. It is a genetic problem so there is no current cure or fix for it.

Although I'm obviously not a fan of my physical body, I do have a good bit of self respect for who I am on the inside, which has helped me deal with it. I feel that my family and the environment I've grown up in has had a good bit to do with me not turning towards any harmful coping methods. I feel that I'm very lucky in that respect.

SophiaGrace said:

hmn I wonder if there is a society or group of people who suffer fromt he same disorder that you could join? You could go to meet-ups...that may help you
My disability is so rare that I dont have a society, but other disabilities have societies for socializing and support...

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There is a convention for my disorder that travels around the nation every couple of years I think. I know that this year the rotation will put it in a bordering state to me. Unfortunately I'm not to sure if I'll be able to make the trip for it.
I believe the ratio for my particular condition is around 1:250,000 so there are certianly other people like me out there, I've never actually met anyone with it though. I can certainly see where meeting other people in a similar situation would be a good thing, so hopefully I will be able to eventually.

Tyche said:

I admit i would like to offer some comforting words, like despite how we look there are people who will care and accept us as we are, flawed or not. Too bad few people like this exsist or are rare, however they still do. You really are a strong person to deal with all this discomfort and doubt, you've managed very well. I thought my ezema was bad when it reached my elbows from my hands and spend alot of time avoiding another occurance (it hurts), now i'm sorry for my selfishness. Good luck and i'm glad you shared.

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Thank you for the kind words Tyche. There are many times when I feel the people around look down on me simply because my flaws are visible and very out in the open. Unfortunately that is the case at times, but I also know that I've met many kind, accepting people in my life. I know that the best thing me or anyone in a similar situation can do is to keep a positive attitude and improve on the things that I can change. (Yeah I know... easier said than done )

I dont think you have a reason to feel selfish. I obviously dont fully know your situation, but I do know that eczema can be tough to live with, and you have every right to not like it. I hope things work out for you too.

i only wish the best for you, and for one to be handling this would take more guts than most of the problems that people normally face.
and the fact that you haven't resorted to drugs or anything is awesome (as badjedidude praised you for earlier)

true beauty is what lies beneath the skin, after all

This sounds like a severe case of eczema(*sales link and massive over quoting removed*). I have used eczemaderm for mine and it helps control it. It is a bit expensive though. If you want a cheaper skin cream that is good for eczema, try eucerin.

I'm sorry. Icthyosis does suck. I don't know anyone who has it, but I do know someone with Neurofibromatosis (sp?). She pretty much devoted her life to the church b/c it was the one place people didn't treat her like a total freak. Thankfully, times have changed and people are no longer instant lepers just for looking different.

On the bright side (and I know this isn't much of a bright side), you pretty much know instantly who the superficial people in the world are. Sadly, there's so many. And you'll find, especially as you get older, that there are a surprising number of people that really won't care in the least about your skin condition.

I used to want to be a dermatologist, so I would find your skin texture interesting, but not gross. However, I imagine you would find that more irritating than flattering, as I bet you got a lot of people wanting to touch you for no reason other than curiosity. I hate when people do that.