Something that has struck me with this Ichthyosis Awareness Month blog project is the ‘coming of age’ realisations that people have experienced. They may not have always accepted their Ichthyosis and visibly different appearances (and that’s ok), but there comes a point where they make a decision of self acceptance. Larisa writes “I finally stopped wasting my time trying to fix what I was genetically given.” She has made a conscious choice to be positive about her Netherton’s Syndrome – and this attitude and perspective is admirable. Larisa used to blog and I’m hoping this piece of writing is the start of a rekindling. Her photos exude confidence. Her words are pretty amazing too.
“Denial. You wouldn’t think denial could be so much a part of my life with the very noticeable skin disease with a name I still don’t even like saying—Ichthyosis. It just sounds icky? Many people probably think it is. Throughout my life I have always ignored the obvious, that something was different about me in comparison to my parents, younger brother, and peers. It was hard to not always think “why me?” and that life wasn’t fair. Honestly, I still don’t think it is. But I do think I wouldn’t have been given this disease if I couldn’t handle it. I know many people wouldn’t be able to, so the fact that I can is an accomplishment in itself. I have always just wanted to be labeled “normal” instead of “unique” and I can definitely go the rest of my life without hearing “well, you’re still pretty.” But these comments most people don’t receive have helped me become a stronger person. I have been years beyond my maturity ever since I can remember. I have overcome obstacles nobody will even have the chance to overcome. But I have also met many people through my story. It’s a conversation starter. People want to know why I am not acting like I’m in pain, why I have a smile on my face, why I have enough confidence to be openly sarcastic. People probably think I should be defeated. Maybe because they would be?
Half the time I don’t even remember I have Ichthyosis. I don’t think it comes into play for me until someone brings it up, or because I have become discriminated against in some way. Honestly, I don’t really bring it up myself. I feel like I shouldn’t have to. I don’t think it defines me. I think it defines other people’s perceptions. With this disease, you become a real life exhibit for eager doctors. Doctors who pretend like observing you will lead to a cure, doctors who come in groups of 40 and poke and prod you to pass residency. After years of believing them, I finally stopped wasting my time trying to fix what I was genetically given. I now choose to live for normal goals. Passing classes, getting a job I love, finding friends who make me a better person. Things that matter. Ichthyosis to me just doesn’t. Not anymore.
Years ago, my mom forced me to go to a camp for kids with skin diseases. Being in denial, I battled with her decision to make me attend, but after that experience I realized I didn’t need to be in denial so much. Those people embraced their differences. They made lifelong friends over it! They had opportunities only possible for people like us. That experience was so rewarding and changed my outlook on life forever. Some of those children (who I later became a counselor for) had the most amazing spirits under the most extreme situations. Some of them literally had to plan every activity in their day around their disease and yet there I was denying mine. I’ll admit, it is much easier to talk about this to my friends from camp than anyone else. I guess I just assume nobody will understand. I don’t want to be categorized in the genre of “disease.” I am more than that. But I think most people let their flaws define them. Whether it is being overweight, being short, being unathletic… it’s amazing to me how much these matters affect a person’s every day life. I truly believe having Ichthyosis has made me not plan my life around what I’m afraid of. Instead of thinking a job won’t hire me because of my disease, I go into it with optimism.
It’s funny how something originally giving you low self-esteem can become the reason to have confidence later on. I can’t explain it really, but I know in a sense I view life with a different perspective. I am able to be proud of my accomplishments because I know I overcame the possibility of discrimination. When I realize how much Ichthyosis has helped me grow as a person, it’s hard not to be a little grateful for it. There is always going to be something you don’t like about yourself. If it weren’t this disease, it would be something else you wish you could change. But that’s life. And this is something we are forced to overcome because if we didn’t, we would be letting Ichthyosis define us instead of us defining Ichthyosis. And that is exactly what it wants from us.”
For Ichthyosis and appearance diversity resources, click here.