We need more compassion as we recognize Rare Disease Day | Opinion


By Dorrin Gingerich

For the past seven years, I’ve received botox injections every three months to weaken the muscles in my neck and shoulders so they don’t tighten, clench and twist. My tongue pushes up constantly so I slur and people have trouble understanding me.

I’m trying to learn sign language because doctors say it could get worse. I’m just 32.

I’m one of millions of Americans who have a rare disease – in my case, dystonia – and we need more understanding and action as we recognize Rare Disease Day on Feb. 28.

First, getting on disability is too hard. The process is a path to poverty and, ironically because of mounting stress, worse health.

I finally went in to apply for disability after my diagnosis was limiting my workday. I’d go to work and everyone would feel uncomfortable for 3-4 hours before I hobbled home. My body was hunched over and convulsing as the government interviewer told me, “I can tell that you need this, but you’re still working so I’m going to have to deny your request.” She admitted she’d never heard of dystonia.

I was denied disability several times; I had to hire a lawyer and contact my congressman to get approved. My symptoms, doctor’s notes, genetic testing, and participation in an NIH study counted for nothing.

My so-called reward after having to quit my job at age 24 was a check for one-third of what I was previously making. My parents still have to support me, and I sell my art to try to add a bit more.

Because of the ridiculous stigma I was raised with towards food stamps. I couldn’t help but feel embarrassment and shame every time I bought food, which never makes it to the end of the month especially if I’m trying to eat healthy.

The defunding, roadblocks, and complex processes that prevent all kinds of government help – not just disability checks – for countless people with rare disorders needs to end.

Secondly, we need support from our communities more than ever before. For me, that starts with understanding my other identities – particularly that I’m both gay and a Christian.

I grew up in a church where the pulpit subtly shamed sickness by inferring it could be a consequence of sin. When I got my diagnosis in my senior year of high school, I wondered deep down if God was punishing me.

This began a long journey to find a safer space to practice my faith – something common for people with rare diseases striving to be understood.

For me, this meant finding a therapist and a new pastor who allowed me to share my confusion and anger towards God, along with helping me grieve for not having the life I had expected. I still appreciate fellow congregants who offer prayers for my health, but people with rare diseases need and deserve concrete social support systems.

As I learned to accept and ultimately embrace my identities with such support and encouragement, as well with treatments, my stress levels lowered. And, since stress is a trigger for my dystonia, this was crucial to my overall health. Not all people with rare diseases have that trigger but many do, and we have a societal responsibility to act on that fact by being stronger allies for every identity of who we are.

Overall, we need to stop making the 25 million Americans with about 7,000 rare diseases feel like they’re a burden on our country or their families, that they only deserve poverty-level income, or that they’re lucky to not be homeless. People with rare diseases and disabilities have different gifts and should be valued. These are all things that weigh on my mind every day,

It’s time for people with rare diseases and especially our allies to speak out as a matter of social justice, keeping in mind that it was here in our state where the words were penned that all of us deserve “life, liberty, and the pursuit of happiness.”

Dorrin Gingerich writes from Lancaster, Pa.

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