Somewhat recently, well not really but what even is time any more? A very dear friend of mine, one that has been with me for the past 10 years of being wellish, then not so well, then being ill AF, has involuntarily become a member of the chronic illness club herself. It’s been weird having a “regular” especially pre-illness era friend become a chronic illness friend, because typically those kinds of friendships have been fairly separate in my own mind. This isn’t to say my “regular” friends don’t take part in chronic illness experience or my largely online chronic illness pals and I don’t share memes and bravolebrity gossip. It’s just for me, in my head they’re separate because I know that there are some things my “regular” friends just are not going to ever understand, no matter how educated they are on my illness, or how many years we’ve been besties.
So my friend let’s call her Regina Phelange, had some funky cardiac shit going on for a while, doc said oh you just have anxiety and I said oh you just have a demeaning old man asshole doctor, and also probably POTS. Anyway thanks to my experience with people not believing me, Regina, armed with knowledge, goes into a cardiology follow-up and does some kickass self advocacy that would make any chronic illness patient proud, and onward we go for more testing. I, being both one of Regina’s closest friends and having gone through all this bullshiz myself two years ago, was obviously pretty invested in this process, and how my girl was doing through it all. Lots of texts and updates and just being there for it, finally, a Tilt table test later and what do you know we have POTS.
I realized albeit selfishly that it was actually kind of dare I say? cool that someone who knew and understood basically every other aspect of my personal life, also finally was starting to see this part too. Obviously no one wishes literal ill on their dearest friends, but if we’re looking for silver linings this would be one of them. My inner circle definitely understand low spoon days, the annoyance of pill sorting, and fights with insurance and all that on a comprehension kind of level, but to have someone so close to you just get it because they’re going through it is different. It’s shitty obviously, but it’s special too.
Having someone you can text about your sweating and weird palpitations without feeling like you’re complaining because they’re having them too is kind of comforting. Everyone insists me talking about my medical shit isn’t awkward or inconveniencing or a mega bummer but it’s also not their normal. So to have a fellow spoonie to talk about that shit with is pretty dope, the added perk in this scenario being that Regina was already a dear friend so the transition was seamless and kind of wonderful for both of us in that sense. We already have that long cultivated best friend shorthand and POTS and PT and salt capsules just fell into the conversation.
Something else that kind of dawned on me thinking about everything going on with her now, is how different Chronic Illness origin stories can be and what makes them how they are. Perhaps I’ll delve more into what I’m calling origin stories in another post, but the take away here was that a few times Regina asked me like, “oh am I bothering you with this?” or “I know you have so much worse going on but can I complain about…?” To these kind of statements I would reply in bold all caps OMG YOU ARE NEVER A BURDEN I LOVE BEING HERE FOR YOU. This largely because I was so completely alone in a lot of ways when I was trying to figure out my diagnoses. I had loving friends and family, but had no clue how to medically advocate for myself as a young, female, chronic illness patient, which is a hard fucking job by the way. I mean it’s why we have such a strong online community, because so many of us were dealing with chronic illness isolated from anyone else with the same experiences. It just makes being able to connect special and important.
So I’m dedicating this post to you Regina Phelange, sorry you have POTS, not sorry we get to be super special chronic illness buddies. Also, thanks for driving me to and from my colonoscopy when we were both like 20 at college that was a lot of responsibility. I would like to publicly honor you for your service. 🤎