Posted 2/18/2020 10:29 AM (GMT -6)
I have maintained a social life, although it looks different from my old one.
As others have mentioned, some friends will stick around and others will bail. In my experience, the ones who stick around are the sort of people who believe in being there for people, believe in community, value people and connections, enjoy conversation, and are good at connecting remotely (via text, email, letters, etc.). People with their own chronic health issues and/or members of marginalized groups tend to empathize more, because they are comfortable outside the mainstream. The people who think friendship is all about having fun together, going places, drinking, being out late, having parties, etc. will fall away. People who have figured out the value of community and real connections tend to be people who have needed those things themselves, so they tend to be older, have kids, have chronic illnesses, have trauma or other struggles, etc. There's a lot of privilege inherent in thinking that your "best" friends are the ones with whom you have the most carefree fun, playing sports or traveling or going to clubs! I don't blame them for enjoying that phase of their lives, when they can embrace those things. One day they will learn.
Another group that falls away when we get sick is people who just don't know what to say and would rather say nothing than say the "wrong" thing. This isn't an excuse, but it's a reason. We can chase them and do the emotional labor for them, but I'd suggest saving your energy.
Others just find us too upsetting, especially those of us who are young and who have young kids. We are cautionary tales! We are worst case scenarios! People need to pretend we don't exist or that we've done something wrong because it's too scary to think that anyone - even they! - could be disabled by and miserable with an all-encompassing illness that is poorly-understood, involves often-ineffective treatment, very few resources, and from which people take years or decades to recover. We are scary as hell. You can chase these people, too, but again I'd advise against it. If they can't tolerate the heavy, then they should stick to what they can handle. These people, if they try to engage, are the ones who will tell you what to do to fix your problems and assume (for their own peace of mind) that the problem is much simpler than you are making it out to be. Having good scripts for setting boundaries with them is important (Captain Awkward is a GREAT advice blog for this very thing).
And of course some of us self-isolate like you described doing. It's exhausting explaining things to people, whether or not you have a working theory of what is going on. It's exhausting to worry about being judged or doubted or seeming whiny. It's exhausting to give updates that are always bad, and feeling like you are letting people down or bringing people down. It's exhausting feeling like we have to educate people and defend ourselves. But we do a lot of the work of our own oppression when we turn against ourselves with internalized ableism. It's crucial to do the work to overcome messaging we have received about productivity and the inherent value of a person.
And going out in public can feel so risky! At various times I have worried about my safety because of balance, dizziness, weakness, coordination, airborne germs, noise levels, passing out (POTS), and just plain being embarrassed by brain fog and feebleness. My diet is incredibly restrictive, so a restaurant or potluck is like a joke. It's okay to ask for accommodation (Let's have tea at my house! Let's meet at a park with restrooms instead of a noisy cafe! Let's do a video chat because it's flu season!). Disability and illness are in many ways social constructs.
I am grateful to have some wonderful friends. As I mentioned, most of my closest friendships are text-based, and I don't see them often in person - maybe once per month or so, depending on the friend. But some friends I text with throughout the day, some I exchange a long email with every other week, some just surface every month or so for a long chat. I am grateful that I enjoy connecting verbally with people, so those sorts of relationships feel perfectly valid to me. I am a very social introvert, so I love connecting with people and need it every day, but I also need plenty of alone time. I imagine the isolation of illness would be much harder for a person who isn't very verbal, who does not like to connect via technology, or who really thrives on in-person interaction.
I think a lot of folks with chronic illness are happy to connect this way. Is there anyone you know going through anything similar? How about new parents staying home with a baby, or someone recovering from a surgery, or an elderly relative who is tech-savvy? A lot of people are starving for human connection. Plus local Lyme groups, like astroman mentioned - through my state-wide email group I connected with several delightful people eager to be in touch one-on-one, and through this forum I have met people as well. (And of course social media, though I don't do any of that.) Also other types of illness, like CFS/ME have a lot of overlap with us. And groups for people who have other things in common with you, of course. Even if you connect with someone about Lyme, it's nice to talk about plenty of other things, too! Another place to find people with community priorities can be church or a spiritual group of some kind, if anything in that realm resonates for you. Restorative yoga classes or qi gong can be a good way to meet people as well who might be in a similar place to you in terms of energy level and need to prioritize health.
It's not the same as friends, but therapy can be a good way to have some human connection as well as work on the issues that might make human connection harder in other contexts, when applicable (the urge to isolate, developing language around setting boundaries or asking for help, working on internalized ableism, figuring out new hobbies that you can do regardless of Lyme, managing the trauma of living in a sick body, managing stress, etc.). There's a variety of types of therapy available, including art therapy and group therapy, or other types that might look different from what you are used to, and it can be fun to explore the different types until you find one that feels helpful for your personality and situation. Isolation is very had for human heath, physical and mental, so having some support around that is key.
This stuff is hard. I think illness has affected all of our social lives a lot. Mine changed a lot, and I felt despair about it for the first year or two. Now I miss out on things I'd like to attend occasionally, but overall I have to say I'm very happy with my crew of good conversationalists who are happy to text all day and have tea on my couch. It just took accepting that a different social life could be just as good or maybe even better than the one I had before.