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I Have a Rare Disease, but That Doesn’t Mean I’m Alone


It just occurred to me that I have a rare disease. 

I guess it would be more accurate to say that the weight of having a rare disease just hit me. It landed on me like a bucket of green slime from Nickelodeon in the 1990s, with potentially a crowd full of people pointing at me saying “Ew!” I feel heavy, awkward and alone. Maybe that’s why I never let myself feel this way before. There is incredible impact as I accept that I do not have anyone else to share my experience with who actually gets it in their own body. 

Whew. Deep breath.

I was fortunate to give an Ignite! talk at Medicine X at Stanford in September. One of the ePatients there asked to interview me for a storytelling and podcast project she was working on about people with rare disease. I hesitated and said, “I’m not sure how much I know about this topic.” I hadn’t thought about it much. As she asked me questions one by one, it began to sink in. Tightness in my throat. Difficulty breathing. Confusion on my face. All of a sudden this thought bubble passed over my head: Whoa, I actually have a rare disease.

For the first time I started thinking back at my illness experience, and it was like all the puzzle pieces started to fit together.

• Hanging out with pregnant women at parties because they weren’t drinking either … not my group, but as close as I can get to community in this situation.

• Getting glasses of champagne at weddings, and pretending to toast while inside feeling sorry for myself … no one else was struggling like this right?

• Joining a yoga for cancer survivors class … I didn’t have cancer, but at least they included me so I would have someplace to go that was physically at my level and supportive of working through illness. Otherwise, I’d be on my own.

• Being told by a nurse at my liver biopsy that I probably had hepatitis C because she could see I had a tattoo, and people get hepatitis C from dirty needles used in tattooing. I don’t have hepatitis C, but at least those are other people that know what liver disease is like. 

• Watching people hemorrhage from ruptured esophageal varcies while I worked in hospice as a counselor, wondering if I would die like that. I realized there was no one else I knew at age 30 who was thinking about this that I could talk to. 

A series of loss. Of not being seen. Of people not getting it. Of being understood for little parts of my experience, but not all.

I come back to the present moment … she’s saying “some people with rare disease say they feel special.”

Special.

I love being special. My family has always told me I’m special, which has its pros and its expectations both. I do not want to be special right now. I yearn to have someone get my experience. To say “me too” and honestly understand what it’s like to have autoimmune hepatitis.

I remember my liver specialist saying to me it’s not good to be interesting to a physician. And that I was very interesting.

Special. Interesting. Translation: alone.

My new awareness of rare disease began in September, and it’s taken me until now to write about it. In fact, I had stopped blogging all together after the first tidal wave hit. But now I think, maybe other people feel the same way.

Sometimes we accept our diseases in layers, so that we can tolerate the gravity without imploding. So that we can survive. And then we grow and learn with our bodies for the rest of our lives.

Hmm, I guess I do have a rare disease. I guess this is what it feels like to have one. And I guess that the rare disease community is my community. A group of medical misfits. Each one alone in our experience. And by being alone, that means we have each other. What a paradox. By not fitting in, I fit in. 

Relief. Through my realization of having a rare disease, I can now seek out other people with rare disease who get my experience. Not of autoimmune hepatitis, but of what I wrote above. Of feeling like the only one. Together a bunch of us who feel like we have no one have a community of each other.

Special. Interesting. New translation: community.      

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