When Celebrities Talk About Chronic Illness, Don't Forget About Everyday Spoonies

When it comes to whether or not media exposure about celebrities with chronic illnesses is good for our community, I’m torn. Since I live with both fibromyalgia and lupus, I’ve been aware of celebrities like Selena Gomez and Lady Gaga’s public struggles with their illnesses. I really do commend them on their bravery to come forward to a scrutinizing public that is so often critical, doubtful and cruel about invisible illnesses. However, I wonder if their public lives with lupus and fibromyalgia warp people’s perceptions of what these illnesses actually do to a regular person’s everyday life. Is any media exposure about our illnesses really better than nothing?

When I was first diagnosed with lupus, it was roughly around the same time Selena Gomez revealed she has lived with this disease for many years. It made it a lot easier to disclose my health issues to people because they would often remark, “Oh yeah, isn’t lupus what that singer girl has?” I didn’t need to go into a lot of detail. But boy oh boy, watching someone in a wildly different income bracket deal with this severe illness really brought it home to me as to how much easier it is to receive treatment when money and support aren’t an issue. Here’s what I wish others knew about real life with lupus and fibromyalgia,

Diagnosis and Treatment Are a Gamble

When you’re not famous and/or wealthy, it’s really hard to afford health insurance. Many people are so severely impacted by their symptoms even prior to a formal diagnosis that gainful employment is difficult or impossible to maintain. This means you’ve got one hell of a gamble as to wether or not you can access medical care. Unfortunately, this gamble isn’t a high-stakes poker game, this is your life, well-being and career at stake.

Further difficulties that disabled people face include being able to actually find transportation to the doctor’s office, being well enough to communicate symptoms clearly and facing the clear bias against women in healthcare that leads so often to the “it’s all in your head” wastebasket treatment.

Those with fame and money have people to drive them where needed, assistants to take notes and the resources to see new doctors if they feel ignored or misdiagnosed. Additionally, their reputation precedes them, so I can all but guarantee you that their medical complaints are taken far more seriously from their initial visits onward.

Healthy Lifestyle and Alternative Treatments Are a Privilege

Listen, I’m all for eating as healthfully as possible and maintaining as active a lifestyle as my illnesses permit. Chronic illness, disability and poverty are nasty partners in a lot of lupus and fibromyalgia warriors’ lives. Having the ability to access fresh, organic foods, supplements and alternative healthcare practitioners takes a certain amount of money. By this, I mean having a car or the ability to access ride share services or buses. Honestly, with my levels of fatigue, pain and brain fog, I’m too scared to ride a bus and try to navigate the different stops along with a lot of added walking. I know that a lot of other chronic warriors deal with these issues as well, so even though public transport is affordable to many, our disabilities don’t allow it to be a viable option.

Preparing fresh meals is great on some of my better days, but the days I’m laid up in bed with a migraine, unremitting diarrhea or kidney issues makes experiencing the joy of cooking a pipe dream. Meal delivery services, including meal kits, are a great option. Once again, these take a certain amount of financial fluidity that disability payments don’t really allow.

Exercise is something to which even the healthy and able-bodied have a difficult time committing. People with chronic illnesses are all but beaten over the head with the idea that we can walk, jog or yoga our way out of lupus flares and fibromyalgia pain. Maintaining a gym membership takes a monthly fee, and once again you have to be able to travel there in order to hop on the elliptical or take a class. Gyms are great, because no matter the weather you’ll have a comfortable place to exercise, but they’re inaccessible to many disabled and chronically ill people. I personally enjoy lacing up my walking shoes and taking my dogs around the block, but my sensitivity to heat, cold and sun makes it hard to get a lot of exercise.

Celebrities always seem to be selling some new health or lifestyle fad on Instagram. Not only do they have the money to try all these options, they often get paid to endorse them. They don’t face problems like lack of transportation, lack of social support and lack of income to bar them from trying the latest, greatest treatments out there. I’m sure if I had a personal chef and physical trainer I could also maintain a healthier weight and higher activity levels. I’m happy that celebrities get to live a life of privilege that allows them to function as highly as possible with these illnesses, but people in the real world are left in the lurch while critics wonder why we’re unable to work out and cook vegan-paleo meals while we deal with lupus and fibromyalgia.

Social Support and Loneliness

Good God, I wish my rheumatologist had told me when he first diagnosed me with lupus that apparently a very common side effect is the evaporation of friends and family from my life. I found out quickly who was down to hang out for the joy of my company, and not just to go to the local brewery and knock back a couple pints. I guess I got boring really quickly when I wasn’t the life of the party anymore.

All of my family, save for my spouse, have abandoned me over the past few years. When I first got diagnosed, they’re attitude was, “Don’t worry, we’ll fight this together!” but I guess they didn’t realize that lupus and fibromyalgia are a daily, lifelong battle. My income slowly dwindled as my ability to maintain gainful employment slowly decreased, and so did their visits and phone calls. My family is fairly affluent, and when I was no longer able to maintain the bare minimum of their lifestyle and attend gatherings, I was informally disowned. Ironically, I was ostracized for my inability to successfully fight and conquer lupus and fibromyalgia. I guess they didn’t do their reading too carefully, since this isn’t a common cold that I can get over with plenty of rest, fluids and vitamins. Also, I suppose they don’t understand the definition of fighting together, because things sure have been lonely over the past few years.

Celebrities have teams of assistants, managers and droves of adoring fans. If they’re feeling lonely, scared or just bored, all they have to do is post up on social media and messages of support and love pour in. I’m not saying that celebrities don’t face hateful trolls, but by and large they have plenty of fans to buoy their spirits when the going gets tough. Assistants and managers offer treatments, massage and personal support, meaning that a celebrity chronic illness warrior isn’t forced to live in the isolation of disability that many of us must brave in silence.

Listen, this might all sound bitter and come across as envious, and maybe I feel that way. People who don’t live with chronic illness doubt the validity and existence of fibromyalgia and lupus because those of us who live with these illnesses don’t look sick. When the only mainstream media exposure that our illnesses receive are from attractive, cis-gendered and rich celebrities who continue their careers, no one outside of our spoonie world gets to see what monsters these illnesses can truly be. They aren’t Instagram-cute, they’re not summed up in a couple of tidy tweets and they’re sure as hell not going to go viral on Facebook.

Everyday lupus and fibromyalgia warriors live every day fighting for basic resources, comfort medical treatment and dignity. I believe that Selena Gomez and Lady Gaga are privileged to have the ability to tell their perspectives on their chronic lives, but what about people that are disabled, impoverished, home-bound and disenfranchised because of these illnesses? Like so many in the disability community, I feel like unless we’re some sort of inspo-porn to the non-disabled world, people want us to shut up and go back home.