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On BFFs: What to Do When Your BFF Finds Out She Has a Chronic Disease

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 naïvete 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.

By philososaurus

Raised on the farmlands of the Midwest, this gluten-free, feminist bunny took New York City by storm earning an MA in Philosophy. She’s currently encroaching on the normative territories in Chicago, spending time jamming the Discursive machines of ‘health’ and ‘illness,' and relaxing with her animal companions: Pfeffer, Yoshi, and Mr(ish) 'Saurus, her human-animal partner.

9 replies on “On BFFs: What to Do When Your BFF Finds Out She Has a Chronic Disease”

I have to agree with this. I’m off school two-thirds of the time (and indeed am currently taking a year off) because of chronic migraines (five or six a week, at worst) and everyone except my best friend calls them “headaches”. No, they are not headaches. Do you throw up when you get a headache? Is that throwing up triggered by seemingly random smells and exposure to certain lights? I very much doubt it.

I’ve had this for as long as I’ve known her, and what she does best is encourage me to treat my migraines as something I can fight back against. I’ll tell her about my shitty week and she’ll reply, “Well fuck that in a laundry basket”, and it immediately allows me to go “…yeah! Fuck that.” and treat my migraines like they’re stupid people I can prod. It’s magical in its effect.

Ugh! Headaches are the WORST. Even minor ones, I can’t imagine migranes, especially chronic ones. <3

And exactly! That’s what’s great about my BFF too that I was trying to highlight. I can just EXPRESS. She encourages me to, to express what I want to say through how I’m FEELING not by whats happening to me.

Fuck that ‘headaches’ thing. That’s such bull shit.

I hate to say it, but there’s a certain “shared mindset” that you get to recognize when you have a chronic disease. You will find that people you previously had nothing to do with will suddenly be your best friend and, sometimes, sadly, the previous bffs fall away. I’m glad that your bff gave you the space to experience and share what you’re going through and maybe your experience will help her in the future.

My favorite (I have severe ulcerative colitis) was “Oh, well at least you can use the time to catch up on your reading.” which would have been great if I had enough energy to lift a book or focus on a page! Grrrr. People mean well, but they really don’t get it until it’s happened to them.

Yea, it’s unfortunate that it works out that way. I’ve certainly fallen out with some people and others have been so so so so so so surprisingly supportive even though we were just meeting/barely knew one another.

Yea, that’s definitely a shared mindset. One of the best resources I’ve had is actually someone with another disease. Again, her and I didn’t know each other TOO well, but because I’d been sick as long as I knew her (but not diagnosed yet), we always REALLY bonded about our inability to do things (like you said with reading).

Man! I get that line ALL THE TIME TOO. Isn’t it the worst? Basically, Im’ awesome at watching tv because its about all I can handle on bad days. My mom has no idea what I do (like what philosophy is/what it means to be doing philosophy) and, even though she’s incredibly supportive, she is definitely guilty of this line a lot. “Well since you’re on the couch, luckily you have a laptop so you can write all those papers.” Uhm, not even a little. I’ve started explaining it in percents. Writing papers/doing creative work means I have to be at 93%. Reading 75%. Reading well 82%, etc etc.

This is some great advice, I always struggle with knowing what to say. Part 2 is especially important for me, I think. It’s sometimes hard to admit (as the friend) that I can’t be as available or as giving  as I’d like.

And if you have some more info on Chronic Lyme, I’d be interested, as I’ve struggled to find a doctor that recognizes it. I first read about it in Yankee magazine I think, and was struck by how many of my seemingly unrelated, continuous issues fit the profile of this disease.

It’s especialyl difficult to be able to claim space for yourself, and to do it at a time that’s anti-inflammatory (so not as your bff is pouring her heart out). And to do some calmly and precisely. Part of my hope for this piece is that, if someone hasn’t had that conversation with their friend, this may provide some langauge to be able to address that it’s not a lack of affection, but a suggestion for a way that BOTH PARTIES’ needs can be met.

Under Our Skin is a great resource. What’s important to note about it is how differently the disease manifests itself in different people. It’s because the bacteria is a spirochete and, even though a lot of patients share the same base symptoms (chronic fatigue, arthritic pains esp in the neck and small joints like hands, and inability to focus/cognitive issues/memory), the spirochete.. .well, it does where it wants. So for me, I have mostly neurological symptoms, where someone else can have mostly muscular ones (spasms, losing use in limbs).

There are a lot of Lyme literate doctors, especialyl where I’m located in the Northeast (where it’s a recognized endemic). The catch is that  — as the movie does a GREAT job of highlighting — the board that defines disease guidelines refuses to recognize it. It’s important to note that 13 of the 14 people on that board are being looked into for conflicting interets (such as investment in insurance comapnies, etc). If you’re looking for one/know someone who is interested in getting tested, PLEASE don’t hesitate to PM me and I can get you in touch with a few people.

*Also, I apologize for all the typos and any unclarity. I’m having a bad brain-day and I feel like I’m using synonyms of what I really mean. =)

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