We in the disabled community should control our own narratives

While scrolling through social media this morning, I learned that the rapper Fat Joe’s eldest son, Joey, is autistic. He wished his son a happy birthday and posted a nice message.

The first comment I saw was from someone complaining that Fat Joe has never spoken about his son (which isn’t true, by the way) or spoken up about autism. That made me think of a similar scenario with another celebrity.

More specifically, the 1993 Sports Illustrated article about then-NFL quarterback Boomer Esiason and his son, Gunnar, came to mind. Gunnar at the time was newly diagnosed with cystic fibrosis (CF). Sports writer Frank Deford, who lost his daughter Alexis to CF, urged Esiason, once an NFL most valuable player, to be the face of the disease so that cystic fibrosis patients could receive funding for the research needed for care and even a cure.

Esiason took on the challenge, forming a nonprofit dedicated to helping the CF community and making public his son’s journey with the disease.

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Because the internet wasn’t widely available in 1993, Esiason and his family probably didn’t face criticism and cyberbullying to the degree Fat Joe has. It’s an unfair reality of life with a disease that we can’t talk about our lives without others on social media criticizing us for the way we tell our health stories, how frequently they’re told, and how private or public we are about them.

We all should be allowed to control our narratives, sharing as much as we’d like in whatever way we feel we need to, and doing it without fear or harassment from others.

My journey in sharing my story

I’ve talked about it a bit before, but back in 2010, I was bullied for having CF. The constant harassment wasn’t done much in person, but rather online via the website Formspring. People could leave comments or questions about me (and my disease) anonymously or put their name and face to it, but mostly they stuck with the former while saying terrible things. It crushed me inside to realize people could be so cruel to someone fighting a disease, especially since these were people I knew, even if they did choose to hide.

Roughly sometime around 2019, when I was sick with sepsis, I decided to start sharing more about my life with CF online, both within the CF community and among friends, family, and others around the world. Because the community was welcoming, I felt more and more comfortable talking about the effect that CF has on my life and some of my daily battles. Eventually, I became so at ease with the process that I applied to write this column.

Because of the online harassment I once dealt with, however, I’m still incredibly wary of participating in things like Ask Me Anything, aka AMA, on Instagram. People tend to be more cruel or tactless on social media platforms.

The general public is going to know only what I’m comfortable sharing in regards to my life with CF. That’s my right. No one else has a right to how I tell my story.

A community of storytelling diversity

Most people with CF have their own story on why they are or aren’t open in sharing their struggle. Some, like me, are cautious while others have responded to bullying through defiant vulnerability, speaking openly about their struggles online or in person.

I think it’s great that other people with CF can be so free and open, seemingly talking online about anything and everything CF in their lives. I wish I were that comfortable talking about everything CF-related, but I’m not.

If a caregiver or a person with CF is comfortable sharing much, much more about their ongoing battles with illness, then that’s their right. They shouldn’t be criticized for oversharing. For many, posting about their story is not only cathartic, but also their way of relating to community. The CF community is practically all virtual because we cannot be fewer than 6 feet apart from one another. The days of CF camps are long gone, so my generation has grown up with a different version of our community than someone 10 years older did.

All of us should be more accepting and understanding of those who share their lives on the internet, whether it’s about CF or any other medical issue. If you want to be like Fat Joe and keep your or your loved one’s battles with an illness mostly private (“I never wanted to post or show pics of Joey because people can be cruel,” he wrote) or be like Boomer Esiason in championing your or your loved one’s battle with CF, we should all be respected.

If acceptance and equality are things most of us want to strive for, then shouldn’t respect of a medical journey’s narrative be part of that?

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.