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Why I Struggled to Accept That I'm Disabled By Dercum's Disease

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I have a debilitating condition called Dercum’s disease where lipomas grow under my skin and cause nerve and muscle pain. I’ve had this for almost 20 years but only recently accepted that I am disabled.

Dercum’s is not actually a disease, it is a syndrome that cannot be cured. Because it is rare, few doctors know how to help. I tried to have a positive attitude and keep moving, even while in pain, but the real reason was I didn’t want to admit that I have a life-changing condition.

When I look back at what kept me from admitting my disability, I realize I was influenced by both internal and external messages.

— There is a stigma that goes with being disabled. This likely prevented me from seeing that I needed help. I’m not the type of person to ask for help. I don’t like people feeling sorry for me. But we all need help sometimes, don’t we?
— My pain is intermittent. I can often go days with it being little more than an annoyance. So I tried to forget I have a chronic condition. But I found that not being mentally or physically prepared made episodes worse than they had to be.
— I need to act like I live in a bubble and can’t be touched. Often friends would go to say something to me and grab or slap my arm. It’s a friendly gesture, so I never said anything even though it would cause me pain for hours.
— I used to be someone who walked fast. With Dercum’s, I had to slow down so my limp wasn’t so obvious. I responded to my pain by trying to seem normal. Whatever “normal” is, I’m not sure. I only know that I didn’t want people to see me as different. But really, aren’t we all?
— Not being able to always act “normal” caused depression I didn’t recognize or want to face. Denying the emotional pain that goes with a chronic condition caused conflicts in my life that I often dealt with poorly, especially with loved ones.
— Doctors didn’t have medical codes for Dercum’s when my symptoms started, so they didn’t recognize or know how to deal with it. The first doctor acted like my pain was imagined. “Lipomas don’t cause pain,” he told me. He prescribed antidepressants saying they might help, but they only made me gain weight and become more depressed.
— It took a while to get my diagnosis. I finally figured out I needed to see a dermatologist. Fortunately, I lived in a city with a world-renowned medical facility and was able to find one who was familiar with Dercum’s and confirmed it.

My first step in accepting my disability came when I finally asked my new doctor, one I found that was helpful after firing three, to give me the forms for disabled parking. But it took getting stuck in a store, unable to walk and in tears of pain, to admit I needed it. This was when I began to realize I had to get over the stigma.

Disabilities can be physical or mental, and often the physical can cause the mental or the other way around. I think this happens more than we realize. Pain can be immobilizing, or just inconvenient. No matter how it affects our lives, pain is pretty common and part of being human. I had to recognize this in order to see the mental strain it put on me.

Denying a medical condition can prevent you from doing the things that may make it more manageable, like eating right and exercising. It wasn’t until I realized this that I started to accept my disability and really talk about it. It’s still hard to explain to people why sometimes I limp, but it’s now easier to talk about my chronic pain as being part of my life.

I wish I had faced the truth long ago. It might have helped me fight the pain and emotional realities of living with Dercum’s.

There are many things that would have been better in my life over the past few decades if I had only admitted that I am disabled. Was I ashamed of it? I don’t know. I only know that, like most people, I was too stubborn to admit I have flaws. Perhaps this is because society tries to tell us we should all be a certain way. Not limp through life or be depressed.

Most importantly, I don’t feel abnormal anymore and this has made all the difference to my mental and physical health. The bottom line is I needed to accept my health challenges in order to face them and find happiness with who I am – a disabled individual who has every right to be happy.

Getty image by Milan Markovic.

Originally published: February 12, 2022
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