Posted 10/27/2022 8:01 AM (GMT -8)
I have amassed a wonderful group of friends who understand what's going on with me, or understand it enough to trust that when I need to cancel/modify plans or say I'm feeling crummy, that it's for a legitimate reason. But it took a while! I definitely had to deal with the heartache (sounds dramatic, but it's the right word) of letting go of people who didn't get it. I wish them well, and hope they never have to deal with one of the many illnesses about which mainstream medicine (and society in general) gaslights and abandons people. But as astroman said, those people are not worth your time, and it's not your job to convince them.
I lost some friends at the beginning of my chronic illness, and it made me reflect on what people want from friendships. It varies! One of my closest friends wanted someone to be there for her when things were tough, do activities with her, and constantly be having fun and laughing. She had no interest in supporting other people, having a chill afternoon at home, or having serious conversations. I loved her, and she's a great person in many ways, but the things she and I wanted from friendships were not compatible once I got sick. Conveniently, her wife is very caring and serious, and now is one of my best friends! Other people I thought of as mere acquaintances stepped up and stuck around, to my surprise. Your people are out there, but it's hard when they're not the people you were hoping they'd be.
Try finding other chronically ill people. People with long COVID, ME/CFS, autoimmune conditions, Ehlers-Danlos, and many other conditions will have a better understanding of what you deal with, and they're looking for friends and relationships as well. I can't give you dating advice especially, since I dated before the world of apps, but people still meet each other in the ways they did before - work, school, hobbies, volunteering, support groups, through friends, etc. An app actually sounds nice because you can make a note that you have a chronic illness and thus weed out the people who are not okay with that automatically! But for people you know in real life, you can mention it in conversation and see how people respond. It's easy to say something like, "I have always wanted to volunteer there, but sometimes I need extra downtime because of a chronic condition I have, so I volunteer at their one-off events."
Don't let yourself fall into the internalized ableism trap about this. There is nothing inherently less sexy or desirable about someone with a chronic condition. Attraction is complex, and I assure you that whatever attracted people to you before getting sick will continue to be attractive. Plenty of people would prefer a movie night to a night of clubbing.
Honestly when I think about my friend group, everyone has something going on - whether a physical illness, mental illness, injury, disability, or neurodivergence - that makes them need accommodations sometimes. I'm 40 now, but this has been true for at least a decade. Everyone. Sometimes I feel okay, but my friend is feeling too anxious to be around people that day, or my friend is feeling dizzy from her last immunosuppressant infusion and can't drive that day, or my friend has a cold, or my friend has a permanent T-band issue that makes long walk not a thing she can do, or whatever. It might feel like it's just you, but it's everyone.
You don't need to disclose that you have chronic Lyme and Bartonella specifically, if you are worried about people having misconceptions about whether those are "real" illnesses. You can say you have "complications from tick-borne disease" or "chronic infections" or "immune system/nervous system dysfunction." I actually find naming the conditions I have because of tick-borne diseases (rather than specific infections) to be more helpful in getting others to understand what I deal with. Dysautonomia, chronic fatigue, brain fog, adrenal issues, hormonal imbalances, IBS, mast cell activation syndrome, etc. paint a clearer picture of my issues than just saying the name of an infection that people might not be familiar with and which presents differently in everyone.
I'm just rambling here, but want you to know many of us have thought about this and felt discouraged. But if you look around, mainstream news sources run articles every month or so about how and why it's so difficult to make friends as an adult, and numerous movies and shows depict the challenges of finding someone suitable to date. Sometimes these things are just tough. But sometimes what makes you feel unusual (even though I'd argue it's more common to have a chronic condition than not!) is exactly what helps you find your people.