“How are you?”
We hear this question every day, often multiple times a day, from all kinds of people. For people like me who are dealing with multiple chronic illnesses, it can be a surprisingly tricky question to answer.
When you are first diagnosed with a chronic illness, it can be challenging to figure out who to tell and who not to tell. Part of you may want to tell everyone because it is all you can think about and you are craving emotional support. The cashier smiles and offers a quick “How are you?” and you want to blurt out, “Actually, I’m kind of going through a lot; I was just diagnosed with a rare disease called Ehlers-Danlos syndrome. And I also have this thing with my heart called postural orthostatic tachycardia ayndrome… don’t even get me started on the mast cell activation syndrome.” But that wouldn’t be socially appropriate, so you hold it in.
Other situations are much more nuanced. For example, a friend from work texts “how r u?” and suddenly you’re examining the relationship with a microscope. How long have you known each other? Does she seem like someone you’d like to confide in? Is your friendship ready to go to that level, or should you wait? Should you offer a little bit of information and see how she reacts? Should you say you’re fine and leave it at that even though you just got out of the hospital, you have two dislocated ribs and your health insurance company is giving you hell?
You can do your best to judge each situation, but there will always be mistakes. Every chronic illness fighter has experienced the piercing awkwardness of sharing too much with the wrong person or at the wrong time where your pal is like, “Oh… uh… feel better soon. I gotta go.” We may forget that our “normal” can sound alarming to other people — ER visits and hospitalizations, doctor appointments every week, unrelenting symptoms of all sorts, numerous medications, blood draw bruises of various shades on our arms, canes and IV lines and feeding tubes and EpiPens. We can sound like “Grey’s Anatomy” with all our casual medical jargon. Meanwhile your college roommate goes to the doctor once a year, hasn’t thrown up since that bad shrimp he ate two years ago and doesn’t even own a pill box.
This is why having a chronic illness can be so lonely. The healthy people around you often struggle to imagine what your life is like, and they simply don’t know how to be supportive. Many of them get uncomfortable. They change the subject. They drift away when we need them more than ever. Figuring out who you can lean on takes time and requires trial and error. When in doubt, remember you can always turn to communities like The Mighty where your fellow chronic illness peeps are able to understand and support you.
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Author: Adira Bennett