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Despite My Rare Disease, I'm Still in Here, Somewhere

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As I am quickly approaching 300 pounds, I often remind myself: I’m still in here somewhere.

I have Dercum’s disease (DD), which affects the fatty tissue, causing abnormal rapid weight gain. I have of hundreds painful, fatty tumors called lipomas and angiolipomas just about everywhere in and on my body. When the fatty tumors become painful, I can tell it is often the first sign of a flare-up, with all-over body pain, similar to fibromyalgia. These flare-ups seem to come and go without reason, although many who have DD are finding a correlation with physical and mental trauma.

I first showed signs and symptoms while in the military. I can go from feeling decent and hopeful to experiencing pain that at times can make me question my own will to continue. I feel like I am disappearing as I continue to gain weight, especially belly fat, no matter what I eat or don’t eat.

I do not eat poorly, at least not often, and was very athletic for most of my life. I just continue to pack on weight. It slowly feels like I am losing my mobility. I know I am in here somewhere, behind all the fat, pain, and devastating neurological symptoms that make me feel stupid, make it almost impossible at times to spell words, and can make my speech turn into mush. For me, this part is very hard to face because I used to make part of my living by writing and presenting to both large and small audiences.

I know I am in here somewhere, behind all the symptoms and medicines and pain. I just am afraid of completely losing myself to this horrible, progressive disease that far more people have than the literature accounts for.

I recently attended the conference for the Fat Disorders Research Society (FDRS) and was amazed to see so many people who look just like me. It was like walking around with mirrors. Everywhere I turned, I saw people from all walks of life. I honestly had to cry when I saw and met so many people doing their best just to get around. It was surreal to meet people from Facebook support groups who I have supported, and they have supported me. I had to go to my room and have a long cry, for who we were then, who we are now, and for all the love we have shown each other.

I ultimately did not get to be a part of a research project due to research parameters. I also did not get a more thorough diagnosis I had hoped for. It was still worth the trip, and thanks to a scholarship, I was able to attend and share my experience with so many people just like me. We are still in here somewhere, and hopefully one day we will find a cure for this painful, horrible, life-changing disease.

Originally published: July 24, 2018
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