A community of support

Muscle Memories

My friend and I stood by the swings during recess as I groaned over how my latest hospital admission put me weeks behind in schoolwork. She passively nodded along, twirling her hair and eyeing our mutual friends next to me. Surely she wasn’t paying attention, and instantly I sighed, feeling dismissed.

I left, wishing she had made more of an effort to understand how my disability impacted my life. In fifth grade, I wish my biggest worries were inedible school lunches, but my biggest worry was that my disability would force me to be hospitalized. I often wished I could talk to someone who understood how being in the hospital made me feel emotionally drained and unable to speak about the specifics of my time in the hospital.

A month later, I had to be hospitalized for two weeks after symptoms of the flu triggered a flare-up of myasthenis gravis. I felt completely isolated from my peers — while the common flu made other kids stay home for a few days, I had to be hospitalized for two weeks. Once again, I felt alienated from my life as a student who had to deal with Friday spelling tests and gossip during recess.

During that hospital stay, I decided to scroll through online community forums to engage with others who suffered from similar autoimmune disorders. I was overjoyed to find a platform where individuals with various autoimmune disorders shared their experiences going to the grocery store or traveling out of state. I was amazed to see strangers supportively commenting on each other’s posts; meanwhile, in my everyday life, people didn’t understand how disability impacted me. When I saw that individuals were also asking for any new updates and research on specific autoimmune diseases, the hope inside of me sparked again.

As I was browsing profiles on the forum, I came across a 13-year-old girl’s profile whose bio said, “MG’s a bitch, but I don’t have to be.” Instantly, I smiled at her bio and scrolled on to read more about her. Her posts read like diary entries in which nothing was off limits. She spoke about her troubles with dating, her lack of friends and her mom’s reluctance to let her out anywhere.

I eventually gathered the courage to message her, and we instantly bonded over our rare subtype of MG and our dislike of current medications to treat the condition.

On a personal level, I laughed about her suspicions that her hamster might have MG because of his unrelenting laziness to run on his wheel. For the first time, I felt like I found someone who understood what it was like to have MG.

Throughout my hospital stay, we continued messaging each other and bonding over our shared struggles. Slowly, I began not to notice new IV medication being administered or even doctors telling me that I would stay a bit longer. Having someone to talk to made the dreary hospital atmosphere light up like the world outside. I felt relieved that I could ease the burden of explanation I had tried to cover up when I was around my school friends.

I was encouraged to make an online profile by my newfound friend. This online community forum became a space for me to write about not being able to participate in ballet recitals because of too many school absences or even how difficult it was to shower with a port. I shared my truth, no matter how grotesque or unfavorable it might have been.

I joined The Daily Californian to use my column to shed light on how living with MG has affected me. Through this experience, I’ve received emails from individuals with MG and other autoimmune disorders who have thanked me for writing about my experiences in a world where these things are sometimes too difficult to discuss.

Writing for the Daily Cal has given me a platform to make individuals with MG feel validated and heard. A girl with rheumatoid arthritis wrote to tell me that no one wants to listen to the burden she’s carried for so many years. Her chilling account of her disability left me in a state of shock because we are all a part of the same community, regardless of any disabilities or autoimmune disorders. Simply, the silence and the exclusion don’t benefit the community at large.

Before I found the online community forum, I didn’t have a platform to share my medical struggles with other people who understood my condition. But in hiding my struggles from my friends, I had shut off a part of my identity. Although these online communities can provide emotional support, I wish I had found that within my circle of friends.

I do not know any friends or family members with MG in my real life, and it can seem like no one understands my experience. These community spaces made me realize I am not the only one with MG. I find that sharing my own personal accounts and reading others’ give me a unique sense of liberation. Individuals on these forums want to listen to me, and they want to be heard. That is the crucial difference between the dialogue that often takes place in real life versus online. The support from the community space made me see that my struggles and experiences with MG are valid.

Simmy Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].