Suffering with responsibility

A few times a year, one or two celebrities pop up in the media because of a chronic pain related medical diagnosis. This type of sharing seems to be on the rise. There are good and bad aspects to pointing a spotlight on under-explained conditions through a celebrity lens.

Often, the headlines focus on how the celebrity has suffered exhaustion and needs to reschedule or pause their current projects. An emphasis is placed on well wishes and very little if anything, is written about the amount of non-famous sufferers. A few general terms (mostly pain and fatigue) are put as the condition descriptors without clarifying the wild variations of these, and many other, symptoms. If the celebrity is interviewed, they rarely explain the deeply debilitating nature of their disease. It all gets brushed over with a glossy finish leaving the reader without needed information about having a chronic condition.

When it comes to the reality of being a public figure with a chronic disease, money and fame don’t make the emotional part of having a painful medical condition easier. Everyone suffers from an amount of pain and daily symptoms that make a huge impact in their world. Of course, money and fame can make it easier to live with the disease.

Access granted by having money and prestige

Top-notch doctors all over the world

Individualized treatment options

Experimental procedures

Expensive medications

Alternative medical procedures, drugs, and therapies

Physical and occupational therapy

Nutritionists and chefs

Home care workers

Daily self-care products and experiences

Mitigated stress over finances

Focus on mental health

A voice and platform to advocate

Problems unique to having money and prestige

Constant lack of privacy

Worldwide scrutiny of image and physical looks

Leaked medical information

Being used for drug/procedure/doctor/company promotions

Inability to stop seeking attention

Career dependent on being able-bodied, mentally healthy, and beautiful

I’m sure that there are many additional problems and benefits to coping with a disease in the public eye. They still have to deal with the ridiculously difficult process of diagnosing. Misdiagnosing still happens and doctors will still have biases about pain conditions. We all go down weird and bumpy paths to try and understand our new bodies. Celebrity or not.

Before my body broke, my career was heavily dependent on being able-bodied. Being physically attractive and energetic were also critical to sustaining success in my field. I still mourn that life and the ways that my body aided my career. I imagine that feeling is heightened exponentially for celebrities. Instead of a “fall from fame” they are pushed over the cliff by the very thing that created their popularity and financial freedom. Sometimes they are young and have known nothing outside of being a public figure. That possibly being taken away is likely as overwhelming to them as it is to the rest of us. We all went through (or are going through) that chaotic cocoon phase from pre-bent to bent and sometimes broken. 

There is a lot that people with an international platform can do to bring positive attention to desperately under-researched conditions. Highlighting the amount of people facing undiagnosable or misdiagnosed chronic diseases is important. They could be honest about the level and types of pain they experience. Learning about the lack of accessibility across all parts of our medically challenging lives is important. Acknowledging the huge support disparity between people who suffer from invisible conditions and those who have visible physical issues. It would also be wonderful to see these celebrities lend a voice to the stories of people who consider or have committed suicide because of pain or symptoms.

The famous amongst us don’t actually owe our ever-growing community their support. Public figures can choose to only share sweetly spun messages of strength and broad explanations of their medical journey. Some of them have the luxury of not being defined by their conditions and they will leave it in the shadows. I get it. The temptation to distance one’s self and career from the ugliness of pain and symptoms is strong. Sometimes I wear bright lipstick and walk through a grocery store like I’m totally “normal”. I have people in my life who don’t know about my illnesses. I don’t spend every day talking about my busted body. But I also don’t shoulder the responsibility of having access to millions of eyes and ears. 

Every time a rare or less-understood medical condition is in the news, it brings attention to our quiet yelling. Someone who is suffering and confused might feel hope and consolation that they aren’t in it alone. A researcher might get inspired to investigate treatments. Celebrities sharing their medical dramas is a new reality in a world with fewer barriers between a person’s public and private lives. For them, it is a blessing and a burden. For us, it is a chance at being heard and seen. That magnifying glass could help one or even thousands. Let’s shine those lights even brighter.