You may remember that “mitochondria are the powerhouse of the cell” from high school biology class, or from all the memes referencing that that’s all we remember from high school biology class, but when your powerhouses don’t work it becomes a much more complicated story. Mitochondrial disease “mito” is a genetic condition that causes your body to not be able to produce enough energy to function. Since everything in your body requires energy, the symptoms can widely range but my particular flavor of mito includes fatigue, muscle weakness, muscle breakdown (rhabdomyolysis), neuropathy, liver fibrosis, immune deficnency, dysautonomia, and daily migraines (to name a few). Due to the wide variability and limited experts in the US, it can be extremely hard to diagnosis and even though I showed symptoms since birth, I wasn’t diagnosed until age 18.

So when I first created a Facebook group for teens with mito it was not some altruistic action, it stemmed from the simple primal need of not losing touch with the first people I’d ever met outside of my family who had the same condition that I did. Leaving my first mito conference, the year after I was diagnosed, we were all sobbing by the hotel pool because the thought of going home, and leaving these people I’d known for barely 72 hours, felt like a part of my soul was being left behind. Little did I know what that group would blossom into.

I feel fortunate that since I was formally diagnosed with mito at the age of 18, it was the same [End Page 112] year I went off to college and the same year I joined my first Disability club, helping me realize my medical diagnosis could be an identity and community, and not just a series of ICD-10 codes. As I figured out what it was like to exist in the world as an adult, I also figured out that social media can be a critical tool for shaping who your community is and who you become.

No kind action ever stops with itself. One kind action leads to another. Good example is followed. A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves.—Amelia Earhart

A group that started with four friends crying at a conference pool grew into over 700 mito teens and young adults coming together for weekly Zoom calls, proms, weddings, and memorials. I feel truly humbled to have created a community that not only has given me priceless friendships but has thrown roots of friendship around the world. There is something indescribable about watching something that you created grow past your wildest expectations, and none of that would have been possible without social media.

Especially for those with an energy disorder and who are often isolated from our peers due to accessibility barriers, hospitalizations, and more, social media was truly a lifesaver. In addition, through this community, I realized that my experience helping friends understand their medical care and genetic results was a skill I could turn into a career. And so I became a genetic counselor—a “GC”—and now I’m not only a patient sharing her story online, but a provider as well.

After becoming a GC, one of the top questions I’ve been asked in graduate school and job interviews is “Would I ever tell a patient that I have mito, and would I be comfortable counseling a patient with my same condition?” The interviewer always had a correct answer in mind: no. But my life was already all online for patients to find, so that ship has sailed—and I am a better provider because of it. Sharing my story online as a “Disabled GC,” I also started connecting with other Disabled GCs and joining that community. Together we’ve realized I’m not alone in being uncomfortable when others tell us to hide our disabilities, and we’ve come together to challenge the ableist assumptions so core to the field of medicine, and genetics in particular, that being a Disabled provider is a risk, not a benefit. Now, not only does kindness spread, but one act of advocacy leads to another, throwing roots out in all directions.

Writing, and especially writing myself in, is my act of protest . . . We live our theories, but our lives are not theoretical . . . Each time I dig into my own experience, unpack it, explore it, bear witness to it by putting it into words, somebody, often several people, miles and miles away, thanks me for writing about them, for making their story known . . . the more of myself I give, the more strangers, complete strangers, say they see themselves in my words. Connecting is an act of love. There is something powerfully humanizing about those connections that writing with honesty brings.

—Guilaine Kinouani from Living While Black

As a Disabled GC on social media, what drives me to post the vast majority of what I do is the countless messages I’ve gotten from others who didn’t feel safe posting about their own experiences. However, they reach out as they feel validated after seeing themselves reflected in my story. I’ve always been known for being blunt and honest, and I joke that I don’t have the energy to be any other way with my mitochondria not working, but that vulnerability, posting the good and the bad, the thoughts that keep you up at night, the experiences that make you feel unseen or unsafe in your larger communities, those are the posts that resonate the most with others. Even if I get kickback for some of what I say, if I can make someone else feel less alone, my social media use is worth it.

I do have to reflect on the immense privilege I have in my healthcare journey and career as a white, upper-middle-class, cisgender, college-educated, neurotypical individual. Still, that privilege also gives me the ability to talk about my experiences as a Disabled, queer woman and not face the same backlash as someone else might. I can be vocal about the continued need to ensure healthcare lives up to the Disability Community’s motto: “Nothing about us without us.” To anyone who thinks there’s something wrong with wearing both hats at once, [End Page 113] being Disabled and a healthcare provider are mutually beneficial.

And while I may talk about backlash from those uncomfortable with challenging the outdated status quo, being honest on social media about my lived experience has opened doors I never would have dreamed about—such as doing a TED-Ed video, being on an FDA panel, and teaching future GCs about mito and the Disability lived-experience. I even give talks specifically about social media use as a Disabled GC I truly have to thank social media for the career that I have—so for every past generation that judges the next one for how they use social media and “post their entire lives online,” I ask you to reconsider this rhetoric.

I could be an immune-compromised, disabled young adult who is locked in their house since COVID started over five years ago, or I could be a Disabled GC and mito advocate who has had more opportunities to give lectures, join committees, and help patients than I ever could have in-person alone. Social media has arguably improved my quality of life more than any other thing I’ve ever tried. My social media community has been a better treatment for my mitochondrial disease than any doctor-provided options. Everyone has to use it in the way that works best for them, and not everyone will want to walk the path I have on social media. You may look back at some of your posts from years ago and cringe in hindsight, but that’s proof that you’re growing as a person, and I hope anyone reading this will consider sharing their own truth with others in whatever way feels best to them. Social media can provide freedom, community, and validation for yourself and to others, who may really need to hear your story right now.