I’m going to say something that not everyone wants to hear: Just because we are sick doesn’t mean we get to be bad people.
Let me explain. I have an inclusive dance company called Comebacks that I co-direct with an occupational therapist. Within this company, we have a variety of dancers dealing with a variety of ailments. We have only one dancer with cystic fibrosis because we are cautious of the “6-feet-apart” rule.
One of my dancers has Ehlers-Danlos syndrome. I didn’t know what this was or how it impacts someone until recently, but I’m learning (slowly) as best as I can. This dancer is on oxygen, does lung clearance treatments, and has a feeding tube due to her disease.
A few days ago, someone contacted her online and accosted her for “claiming to relate to those with cystic fibrosis” and accusing her of pretending to understand the CF experience. To be clear: She does not. She understands her own experience and nothing more.
Here is why I am mad. First, someone (seemingly with cystic fibrosis) accusing someone they don’t know or understand of something they don’t know or understand is nonsensical, maddening, and sort of meta. Second, well … refer to my initial thesis statement: Just because we are sick, doesn’t mean we get to be bad people.
I have never understood why those with a chronic illness (myself included) feel it’s OK to have chronic narcissism.
The first problem with our perseveration about ourselves is forgetting that other diseases exist in the world that use the same treatments. Primary ciliary dyskinesia. Idiopathic pulmonary fibrosis. Bronchiectasis. Lymphangioleiomyomatosis (try saying that three times fast). There are even variants of cystic fibrosis within cystic fibrosis. (Hi, it’s nice to meet you. My column is about being within the grey genetic area.)
Just because we are ill doesn’t mean we need to be ignorant. Nebulizers, lung clearance, feeding tubes, cannulas: These are not exclusive to cystic fibrosis. And they don’t give us the right to judge or denounce another.
The second issue is the pervasive and mounting prevalence of assuming another sick person wants to be your type of sick. What makes us so special? Why in the world do some (fortunately a very rare few) in the annals of the anonymous internet believe that CF makes us better?
The rest of the world doesn’t know a lot about our struggles. This can make us feel isolated. Disengaged. Burdened by the need to educate. But if we wish others were more knowledgeable and understanding of what we go through, why can’t we offer the same? Other diseases exist, and we can, in fact, learn about them.
Hopefully a very, very, very rare few of attention-mongers exist in the world twisted enough to want this life. But if our identity is so dependent on our own suffering that another’s suffering takes away from us, then we have bigger problems than how much or how little someone relates to CF.
The truth is: We get perks for being the sickest in the room. Maybe we get to fast-track through the ER because of germ protocol. Or maybe we get a room to ourselves (with Diddy and a bottle of Courvoisier) because of isolation precautions. Or maybe it’s just knowing that our cold is more dangerous and scary than someone else’s plebeian cold.
And it is. It’s not on purpose. Life is hard. Life is mean. I’m not blaming the cause. But I am holding us accountable for the actions that follow.
We are not the only disease in the world. We are not the only people who require treatment. And not everyone out there wants to be us — including some of us.
Perhaps in feeling isolated, we can actually find ways to connect.
Maybe with our need to educate, we can also get educated.
And when worst comes to worst, we can always remember that nothing is stopping us from being better people — even when we feel the worst.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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