For some time I have been feeling absolutely crushed an devestted about what EM has taken from me at university, and my adolescent life in general (I have just finished my masters degree).
Throughout my teenage years and the first three years of university, I avoided people. This wasn’t just due to EM. I had a bit of a troubled time personally as well. But I know that my EM has made it so hard for me to feel confident in spending time with people. My hands are always discoloured, and flare daily when it isn’t summer (active heating makes it better). When I hang them down by my side, they are always bright red, irrespective of the time of year.
I have learned to keep my hands folded, or to play with my necklace or something of the sort to keep them elevated, but eventually it just gets awkward. I feel like the behaviours I have adopted to keep my hands hidden or looking reasonable have fed back to lower my confidence, while I was always a very socialble and outgoing kid.
One thing that (paradoxically) has upset me very much in the last year or so is being told that fairly attractive? I had never thought much about my physical appearance before, preferring to hide. But I had made a conscious effort to try to be more sociable to help with my low mood. I finally started to ‘open up’ a bit and spend more time with people, and with that came a considerable amount of male attention- at least, before they saw my hands. And it just makes me so sad. Because I really started feeling something for someone, but a combination of my lack of confidence and unsightly flare ups made whatever was there gradually dissolve. And it was very painful. I so wish I had been able to have a normal adolescence, doing crazy things and learning about myself and relationships. But instead I have sheltered myself, not exposing my hands or lower legs if I can help it. And it so confuses me, with the way I have to behave with other people. Often, when I go out I get complemented on my looks and approached by men if I am wearing gloves. There is such a wierd incongruence between the EM look and the rest of me, and I no longer know how to think or behave with it.
As a child, I was always so open and sociable and likeable. The direct effects of EM, as well as secondary effects in confidence and safeguarding habits I have built, have so affected my ability to have social interactions and feel comfortable with a partner (and find one).
I know that many people will be inclined to say ‘the people who matter won’t care about your EM’, and ‘you will find someone who will love you just as you are’, but somehow that gives me absolutely no reassurance whatsoever. I think some young sufferers will understand what I mean- I know in the long run it doesn’t matter, and I will eventually forget having ever wanted to have a more ‘normal’ adolescence relationship-wise, but there is a certain value to the experience… I know also that this is such a trivial matter and I should be greatful for the fact that my EM isn’t crippling me yet, as it does to so many people and it may well do in the future. But I guess it hurts when you are in the midst of emotional relationship-turmoil.
Sorry for the long post But it would make me feel better to know that I am not alone. Is there anyone else who is young and/or attractive, and has felt the pain of EM taking away a normal youthful social life, or some weird clash between their ‘natural’ appearance and EM appearance, or maybe lost a partner/love interest who you really started to care about?