Imagining a reality TV show about life with hemophilia
What style of show would work best for the bleeding disorders community?
It’s impossible to turn on the TV and not find a reality show, in any of its many types. Some are like staged plays that claim to be real, yet they’re often scripted and orchestrated before they’re shot. Others are more social experiments in which human behavior is observed and analyzed under specific conditions. Let’s not forget the ones where participants compete against one another in high-pressure situations for prizes. And finally, some reality shows are like watching fish in a bowl. Audiences observe the participants, whose lives are on display at every moment. They can be fascinating, but they often lack truth.
I’m a fan of a few reality shows, I confess. The ones that I find most interesting are the “fishbowl” shows. A new TLC show called “Baylen Out Loud,” for example, chronicles the life of a young woman living with Tourette syndrome. Cameras follow Baylen as she navigates the world with a severe case of the neurodevelopmental disorder, which hinders her ability to move out on her own.
As a hemophilia parent watching Baylen’s journey, I’ve wondered what a reality show documenting life with a bleeding disorder would look like.
How would we depict life with hemophilia?
Would a reality show about hemophilia work best as a raw, unfiltered, fishbowl view of a person’s daily life? That kind of show would need to feature factor infusions and the difficulties of treatment compliance. Visits to an emergency room and hemophilia treatment center would need to be included as well.
Perhaps an educational and advocacy-driven show would be a good option. This kind of reality show could highlight different perspectives from the bleeding disorders community, letting viewers see parents of a newly diagnosed child and adults who remember the days of treating with cryoprecipitate. It’d also be important to include children who are beginning to understand their bleeding disorder and healthcare providers working to find the best treatment options for their patients.
How would a competition-style show look in the world of hemophilia? It could involve participants tackling physical challenges that push them to their limits, but that wouldn’t be safe or doable for everyone with a bleeding disorder. Another possibility is a competition involving mental challenges, such as puzzles and problem-solving. Regardless, the show would emphasize that hemophilia doesn’t define a person’s limits.
But given everyone’s varied experiences, identifying the best type of reality TV show for the bleeding disorders community would be nearly impossible.
Even the reality shows of my two sons, who are 29 and 19, would look strikingly different. My oldest, Julian, would have a somewhat dull show. To date, he hasn’t had a joint bleed or major hospitalization because of hemophilia. His life has been idyllic, despite managing his condition. His hemophilia show would likely have low ratings.
On the other hand, my son Caeleb‘s show would be a ratings winner with plenty of tension and high stakes. During his elementary years, every week was filled with drama and wonder. Would he be hospitalized? How much would his knee swell? Would his inhibitor level rise? Would he need to use a walker or a wheelchair? I lived this show, and it wasn’t fun.
Reality television thrives on drama, suspense, and human connection, but no single format can fully capture the complexities of living with a bleeding disorder. The reality varies drastically from person to person, as demonstrated by the significant contrast between my sons.
While I love a fishbowl reality show with plot twists and turns, I’d prefer that both of my sons’ shows be too dull to get good ratings. Regardless, their resilience, determination, and courage would shine through as they navigate life with hemophilia.
Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.