I have rare diseases. Social distancing is part of my life.

by Alicia Hopkins

Imagine a world where for lengthy periods of time, you can’t go out. 

That’s me. I have Common Variable Immunodeficiency. 

My life before the COVID-19 crisis included a lot of time at home. It’s a full-time job trying to manage my five rare diseases. Sometimes I have three or four medical appointments a week, only see my aides and have limited opportunities to be in community. What little time I have is devoted to art, advocacy and finding resources for others in need. 

Six years ago, when I got sick, I formed the National Resources and Network Facebook group. I shared more than 10,000 resources before a Facebook glitch caused the files to disappear. Even after that, I was there providing resources to people. My friend Jessica from Alabama helps me admin this group. We share resources, from where to find food to how to get a discount on a new computer to how to find transportation to the doctor to how to get prescription assistance. 

Sometimes people notice that I am gone. There are times people don’t — like last year, when I left the arts scene for four months while trying to do the application for the Undiagnosed Diseases Program, a National Institutes of Health program in which doctors give people with rare diseases tests and consultations in hopes of diagnosing and possibly treating their illness. I was so sick that I couldn’t be around people. I eventually shared my struggle with a friend who encouraged me to keep pressing on. It wasn’t easy to share the struggle of how hard it was to get out in the community despite all I had going on, but I did. 

The reality of my life behind a closed door is not about me as much as it is about finding ways to help others. 

I have learned over the years that my disability may be debilitating at times, but there is still much I can do in the world to help others. I love information. I have a photographic memory. There are days I feel like a human card catalog or mobile Pinterest on wheels. And there are always people in need. So during this crisis, I have had even more than my normal flux of requests. 

Last week I reached out to folks in a Missouri Facebook group to help coordinate food to be delivered to a friend with a disability who lives there. I started a peer support group at the start of the COVID-19 crisis, and last week, coordinated items to be delivered to various members of the group, including 15 different people across Ohio. I even gave up the possibility of buying an iPad — gift cards I had saved up instead went to shipping people items in need. It really isn’t about me, it’s about helping others. 

I specifically focused on people with disabilities, asking people, “instead of helping me, can you help these folks?”. I coordinated food to be delivered to several people with disabilities who don’t drive and can’t go out in large crowds. Even a couple of people with disabilities offered to help. 

I even gave advice on my Facebook page to all beginners who are under quarantine. My life before the COVID-19 crisis involved the reality of the four walls of my house. I learned to adapt long ago to social distancing, and no one asked me if I needed help or toilet paper or someone to go to the store for me.  

People in the disability community feel left behind in emergency preparedness planning because we have been behind. When COVID-19 cases began arriving in the U.S., it wasn’t the political leaders or even average citizens creating mutual aid pages. It was people in the disability community, who were in panic and had every right to be. The supplies they rely on every day to keep their providers working, like masks, gloves and hand sanitizer, were gone from the shelves because of hoarders. This made me see I had to start something in my own state for peer support through this. My own people not only needed supplies, but they needed peer support as well. 

This COVID-19 situation hasn’t changed what I do for my community. But it has changed how I see my community. It’s opened my eyes to how emergency preparedness planning doesn’t include people like me. There are no backup providers for many adult day care programs. The lack of caregivers was already a national crisis; several of my friends have already had caregiving agencies tell them no one was available to provide the care they need, even though they can’t be on their own for longer than a certain period of time. 

There’s lots of work to be done. But it assures me I can keep on doing what I do every day: Sharing information and resources. Being stuck at home doesn’t mean I can’t be of service to my community. 

We all need each other. We also need to think about people who were excluded from the general sector of help before the COVID-19 crisis — and who may be again after it ends. That is folks under 59 living with disabilities. The services we have are what we have, and we don’t have people calling us up just to hang out or ask if we need a ride to the store. 

Maybe this crisis will change that. 

Alicia Hopkins is an artist and the founder of the All Abilities Art Expo. In this photo, she wears a blue wig to raise awareness of dysautonomia.

Photo: Alicia Hopkins