Last August, after years of doctors’ appointments and too many tests that came back as inconclusive, I was diagnosed with Chronic Lyme Disease, which until a few months prior, I had never even heard of. All I could do was talk about it. It was a way for me to work through what I was dealing with, not so much in a therapeutic way (though that, too), but it seemed essential to even to processing what was going on. I knew that hearing about it all the time was burdensome to certain others, but I also know that I think through talking (I don’t know what “thinking before you speak” even means). I tried a number of different methods of “sharing” my disease, but ultimately couldn’t break away from saying all of it”¦ all the nasty, difficult details of procedures, doctors, and fears. Asking me a simple innocuous question such as, “How are you?” – to which I’ve never been able to answer, “Fine, thank you,” not even to the lady at the deli – was like a flood gate. Because I had no other opportunities to work through what I was thinking, that was all I needed. (Also, deep down, I like to think that when someone says, “How are you?” they mean, “Seriously, kid, how are you?”)
Certainly, finding out about and dealing with a chronic disease is tough. Doing so while you’re in graduate school in the most exhausting city is tougher. But navigating my social relations now that I’m “a sick person” proved to be the greatest obstacle.
(Pardon me while I get a little fired up, but…) I could write a a fucking book about these social relations, and, if I did, it’d be titled “The Surprising Amount of Ways Someone Can Make Your Chronic Disease About Them.”
That’s why this tiny little thing my BFF said to me while I was drunk and upset about life was so friggin’ fantastic. This particular drunken evening came following a meltdown between a close friend (and classmate, and roommate’s gf, and sister-in-the-existential-crisis-that-is-philosophy) and me, which ended with me crying TWICE in a packed restaurant with all our friends around.
Following said worst-night-ever, I was especially anxious about attempting to express what I was dealing with in a way that was relatable, but not too overwhelming. I was failing pretty miserably when she said this magic phrase: “I’ll never try to understand how you’re feeling.” In saying that she wouldn’t pretend to know what it’s like, she enabled new, freer modes of communication.
So why is this the most amazing thing she could have done? Let me tell you in three parts:
Part 1: The How and the What to Express
In expressing what she did, my BFF took the pressure off to explain in understandable terms the way I interact and sense my body – literally, the way I live in my body – to someone whose body is “healthy” and for whom a trip to the doctor is routine.
(As a side note, I’m so effin’ tired of hearing, “Your procedure will go fine. I got the same thing done a year or so ago.” Cool. And thanks, I know you’re trying to help, I do. But you’re missing what’s most important and that’s recognizing that it’s my body with all of its”¦ idiosyncrasies.)
As a result of this, I could express how I felt (emotionally) about how I was feeling (physically).
What I mean is, before when I was asked, “Hey hun, how was the doctor’s appointment?” I felt like I had to say, “It went OK. I had to get a ton more tests, but hopefully they’ll lead to (insert details about treatment here).” Now, I can say, “Uhhhh omfg I’m so tired of being at the doctor. I honestly feel like a pincushion,” or, “I feel like a totally different person. Some real enlightening shit, this new med.” I was able, now, to get angry/sad, and get right to it, rather than the first conversation which would exhaust itself before any real sharing and support (like in the latter case) could be done.
By skipping straight to how I FELT about it all (rather than giving all the details of what “it all” was), we could cut to more important matters… like our favorite twitter accounts, or money-related stresses.
This understanding that what I am dealing with is, overall, un-understandable to a great extent, has, I should stress, NOT led to an ignoring of the issue. Quite the opposite. Instead, we are more frank. I now feel more comfortable just saying the stuff that’s pretty hard to hear. But because it’s not mixed with all the medical jargon – which easily becomes overwhelming – that hard stuff becomes… softer.
Part 2: The When to Express
Have a conversation, a real one, about boundaries. And, if necessary, have a second… and a third…
Because, seriously, if you can’t handle hearing about it, don’t ask how I’m feeling. So much pressure is put on “the sick one” to keep the bubble of naÃ¯vete around “the healthy one.” In my opinion, the most successful partnerships (and here I’m talking more than BFFs or sick/healthy), are the ones where boundaries are defined and taken responsibility for (and are open to renegotiation).
More tangibly, if what you have going on in your life right now means that My Sick is too much today, that’s OK. You can still be there for me without sacrificing caring for yourself. Needing a day off doesn’t make you a bad friend. If it’s because you’re empathetic and are having a hard time seeing me struggle, I can get down with that.
I know this is a difficult one to feel out as it differs for every relationships, but being insincere (such as asking a question when you don’t have the energy for the answer) will lead – I assure you – to a fissure in your BFFdom that may not be recoverable.
Just don’t ask me how I am feeling and expect me to sift through what is enough for you to hear, while I am sifting through what is enough for me to share.
Part 3: Fucking Up: “˜Cause it’ll happen
Most importantly, remember this (and I’ll try to, too): this is new space for both of us. The best thing my BFF did was allow me space to fuck up. This means that I did all the things that I just advised you not to do. I shared too much, too unclearly, too frankly, too vaguely, too little, too bleak.
At the heart of this, what is so relieving about my BFF is that she gets that as I learn how to treat my disease, I’m also learning how to talk about it. And, perhaps more importantly, how not to have to talk about it so much.
So if your friend finds out about or is dealing with a chronic illness (or serious loss, or a difficult job, or joblessness, etc.), what is essential to understand is that you can’t imagine what she’s dealing with and being a good friend means that you don’t try to. But maybe you can imagine is this: it’s never not on my mind. It’s a part of my daily existence. This doesn’t mean that all I am is my disease. No, I’m many other things (girlfriend, student, feminist, bunny-owner, probably human”¦). But when we are talking about these other things – say, my life as a student – we’re talking about my disease. And if you just know it, recognize it, and concede it, we won’t have to spend the time explaining the nuances of the way that it affects me, and we can get back to discussing why Parks and Recreation may be the greatest show on TV.
Notes: First, even though I use the singular, I have two BFFs to whom the above applies. The article was inspired by both of them. Incidentally, they look a lot alike and are frequently mistaken for the other. Therefore, my flawless logic skillz tell me that you are a good BFF if you’re super tall, super skinny, with thick glasses, bangs and long brown-ish hair.
Second, here at PM, we have a nice little group that’s dedicated to P’s With Disabilities (and, conveniently, that’s the name of the group). So if you’re struggling with yours, or are looking for a community, we’re starting a pretty wonderful one here at PM.