I’m not selecting my dream all-star lineup, as it may seem. Rather, just naming a few of the celebrity names you may hear every so often in the news when talks of chronic illness arise. Now you may look at any one of these people and the standard “but they don’t look sick” is probably the first or second thought in your head – unless you yourself suffer from one of the many invisible illnesses that so many globally struggle with on a daily basis. You may see a photo of one of these people where commentators comment on weight gain, and all you see is the standard “moon-face” of prednisone. Invisible to the outsiders, but us spoonies can see another pretty clearly. When gossip columnists whisper about rumors of rehab or drugs anytime an A-lister goes MIA, we know better.
So, if so many people in the public eye are living with chronic illnesses and disease, why is it that people still seem to know and understand so little about them?
My theory is that these celebrities still don’t look sick…and if they (and we) don’t look sick, we must not be suffering enough for people to learn more and care more about supporting funding for disease research, right? Invisible illnesses clearly don’t need celebrity telethons to raise money, because they obviously aren’t that bad, right? I mean, if you can still put on a concert and sing and dance for hours on end, or be one of the greatest athletes in our modern day, then it’s all good, yeah?
They - like every other spoonie - struggle almost entirely in silence. They live each day in pain. And just because they are successful despite what they survive each day doesn’t mean that they aren’t still suffering greatly.
Let’s take Selena Gomez, as she is currently bringing the current uptick in social media discussions about chronic illness to light. She’s young, successful, beautiful, and is taking selfies SMILING in the hospital. So she MUST not be too sick, right? I mean, she has all the money in the world, so she can afford the best care and is probably just being dramatic when she talks about being “sick”. Except she’s not. And money can’t buy health and it can’t buy a cure for her or anyone else. But we see a cute young girl giving us all a smile with her bestie in hospital garb and breathe a sigh of relief that “at least it’s not cancer”. And they’re right. It’s not cancer. But we go through a lot of the same treatments. We undergo chemotherapy for a multitude of autoimmune diseases to gain control over our immune systems. We have blood transfusions and dialysis and are anxiously added to transplant lists. We have organs removed and joints replaced after they’ve been destroyed by our own bodies. We take drugs that make us physically ill in order to keep our bodies functioning. But at least it’s not cancer.
We may not live with illnesses that come with a “look” people recognize. And they are sometimes hard to understand and go ignored. It’s easier to ignore something than learn about it – I get that. But just because we don’t look sick doesn’t mean that our illnesses don’t need the public’s attention. It doesn’t mean the research to help us survive doesn’t need as much funding. We don’t have pink ribbons or parades, but we have mothers, kids, and yes, even celebrities, that want a life they don’t have to fight to live each day.
I have had four people approach me since the news broke about Selena Gomez a few days ago. People who have known me for years and have known I have autoimmune diseases for just as long, who asked me for the very first time about them. You see names of diseases become trending topics for a few days when news breaks of another celebrity diagnosis…and then the interest fizzles away. And while I’m grateful it sparks people’s attention, and often even causes a short rise in donations to foundations of research for said illness, it shouldn’t take an A-lister opening up about a terrible affliction to get funding, and it certainly shouldn’t take a superstar being sick to get people to care about the millions of others fighting each day.
So please remember – before you judge someone who “looks perfectly fine” on disability or before you leave that nasty note on that young man’s dashboard for parking in a handicap spot, or before you decide you are an expert on celebrity weight gain and who clearly looks like they’re abusing drugs or seeking attention…keep in mind that our illnesses don’t always make our insides and outsides match. Whether we are on the red carpet or at the grocery store.
“The fatigue is hard to explain unless you have it. Some mornings I feel really sick, like when you don’t get a lot of sleep or you have a flu or cold. I always have some level of tiredness. And the more I tried to push through it, the tougher it got.” – Venus Williams.