The Balancing Act of Knowing How Much to Share With Friends When You're Sick

Being met with incredulity and misunderstanding is not uncommon for someone with a rare illness. I’ve never heard of this! they say, accusingly, making it feel as if they’re trying to catch you in a lie. Even when the physical evidence is right there in front of them – hello, abnormally large limbs – many have the knee-jerk reaction of trying to deny anything might be wrong.

I’ve gotten good at shrugging it off – of quoting statistics.

One in 20000, last time I checked. Yeah, I also have to spell it out for my GP. Yeah, I deal with it.

What I’m less prepared for is when my friends do the same.

For the record, I’m not talking about random acquaintances or people I know in passing. These are friendships that span decades and continents, that survived multiple moves across the world, that outlasted several romantic relationships and a few professional ones. These are people who had seen me at my best and at my worst… and there are still things they don’t understand about my body and what it means.

They don’t understand that the stoicism is a necessity, not a choice.

When you are repeatedly told you, personally, are not a good fit for a game-changing therapy, you have to adapt and overcome. The only other option is to drown in your own misery.

They don’t understand that there are trade-offs with regards to how much you share.

I don’t tell them the minute details of my illness, so my friends seem to think it doesn’t affect me all that much. That I don’t struggle with body image, with medical fears, with uncertainty or other illnesses. That because I focus on what our mutual interests are, there isn’t a part of me that is just focused on Klippel-Trenaunay syndrome (KTS) and everything that it does to me.

They don’t understand why I choose not to share certain things with them.

In an ideal world, there is no “buzzkill” topic among friends. We don’t live in that ideal world. I’ve learned to avoid the heavy pauses, the awkward silences. I’ve learned that what follows is withdrawal and silence. I’ve learned the hard way that there is a big gap between what you think you will do for friends and what you can actually do for them.

They don’t understand why you don’t like being compared to other people with a different diagnosis.

Not too long ago, I was told that other people with rare illnesses should suck it up, like I suck up my KTS. That life isn’t fair, but that it is no reason to try an extreme treatment. They don’t understand – won’t understand – that had there been a proven therapy that would help me (my individual case), I would have taken it in a heartbeat. Medical breakthroughs are celebrated, all the more when it is regarding a rare illness because funding and research is hard to come by.

And still, I am friends with them.

Still, I keep on hoping that they will understand.

But the thing about having a rare illness is that you have to walk a fine balance between sharing and keeping things to yourself.