See this here? <– It’s a blog post I wrote in November, 2012 which my friend Lindsay liked. Lindsay writes Musings of a Dysautonomiac and I don’t even know how she found my blog. That was in its infancy, when I was just venting to the universe because I didn’t know what else to do with myself, before I even knew what dysautonomia was. That’s 5 years of her friendship and, like so many others I’ve met through this blog and its associated Facebook account, I treasure our relationship. I rely on her/their humour, honesty and nonjudgmental support. She wrote a love letter to her friends and expressed everything I feel better than I could have, so I’m sharing it here. And, in case you’re too lazy to click on the link, I will copy it below.
A LOVE LETTER TO MY FRIENDS…
Growing up, most of my friends were boys. I was into riding bikes and playing video games, and most other girls were not. As I entered my teens and 20’s my closest friends were female, but the majority of my friends were still males. Generally, I always felt that I got along better with men.
While that’s probably true, as I entered my 30’s I began to realize that I get along best with kind, brilliant, funny, drama-free women. In short, You.
Yes, you, reading this. YOU. (Apologies to the, like, 4 men who read this blog. I think you’re swell, too).
I have lost friends since I first became sick. Some were “party” friends, who didn’t have much use for me after I stopped going out as often, and some were needy friends who didn’t like that I now had problems of my own to solve. Some were just friends, and I don’t know why. I usually lose a “friend” or two everytime I post something about postural orthostatic tachycardia syndrome (POTS), dysautonomia, mast cell (MCAD), or chronic illness in general, on Facebook, which I do about twice a year. Apparently I’m not allowed to post occasionally about a lifelong life-altering illness, but am expected to “like” the 5 posts about a friend’s kid who has the flu.
I have gained friends, too, through support groups and this blog. Some live in my city, and others live in other states and countries spread throughout the world, friends who I have never, and unfortunately due to our illnesses probably will never meet in person. There’s a kinship in mutual suffering; we fight different battles in the same war. I save every email I have received through this blog. That perfect strangers share their fears, their vulnerabilities, their hopes, and their stories with me is incredibly humbling. We are unlikely friends, brought together by circumstance, but held together by compassion and understanding.
A friend recently got married, and while we were discussing the wedding plans over a drink, she asked what she could do to make it easier for me to attend. At that wedding, friends sat and stared at the ocean for over an hour with me, as I was moving pretty slow after three migraine days that week. For my birthday last week, chronically ill friends whom I have never met sent birthday messages. And not just “hey, happy birthday” messages, but touching messages that remind me that, although we have never been face to face, I have still been seen.
Chronic illness is hard on friendships. As a whole, we aren’t the most reliable bunch. We get sick and miss important events, even after promising we’d be there. Due to brain fog, we may forget important details you have told us. We probably aren’t going to join you for a hike, or a late night party, or skydiving, or standing in line at the grocery store. You’ll have to help us, from time to time. We may not make the best bridesmaids, godmothers to your kids, or workout partners. Somedays, we may not even make that great of a friend.
But I promise you this: we will never take you for granted. Because we know what it’s like to be left behind.
Friends, thank you for letting me share my life with you here. For letting me be this confused, existential mess, and for responding with softness and acceptance and dirty jokes and “we’ll figure this out togethers”. For remaining my friend through it all, or for sending me an email through this blog and planting the seeds of friendship.
I will continue to strive to be worthy of your friendship.
“In the end, all you have are memories, and usually the ones you have with friends are the ones you treasure most.” – Notes from the Universe
Smell ya later.
UGH, so beautiful and accurate. ❤
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i don’t even remember how i first came across your blog, but i know it was one of the first i followed. i just loved your writing style and your straight forwardness and your beautiful personality that shone through. so glad i did come across it that day, because i genuinely care how you’re doing, and love reading your updates (and seeing photos of your pups!!)
Kept this email open on my computer until I finally had time to read it. I kept forgetting it was someone else’s words because I could hear you saying them. I can only imagine the isolation; thank goodness we live in an age of social media because there are so many real and true connections made there. Love you always, dear one, from afar:)