Ever since I got Lyme, or rather since Lyme became chronic, I’ve felt socially isolated. In truth (as I’ve said before on this blog), I was socially isolated even BEFORE Lyme, because I’m on the autism spectrum and never really wanted friends growing up. Around the time I got Lyme was when I started to get interested in connecting with others, and that need became much more pressing when I started to feel trapped in my own “personal hell”, dealing with something my peers couldn’t understand, and that kept me from enjoying life the way I wanted to as an adolescent.
Very close to a year ago, I had the first romantic relationship of my life. I’m actually wondering whether, looking back, I will in fact consider it a romantic relationship, because not only did it only last a little over a month, but less than halfway into it there were already signs that we weren’t compatible. As soon as the excitement of “I finally have a girlfriend!” from our first date began to wane, the clashes started showing up. It was in any case far more of a romantic relationship than anything else I’ve ever had, as in middle and high school I didn’t date at all, and then by college I was already deep into Lyme. When I started to go to aspie groups, there were a few girls who were interested enough in me to try dating, but I was playing along just because I was desperate to try and not because I found them at all attractive. Conversely, all the girls I had crushes on showed no interest back.
From the ways we weren’t compatible, I learned some things. Firstly, I learned that I don’t do well in a relationship with another person who also has what I would call “control issues”. What I mean by that is a need to constantly be in control and/or to self-direct things to an extent that it sometimes gets in the way, when getting true strength and confidence means being open and/or vulnerable enough to truly self-examine and/or to seek and accept help. These are the people who stay up even when they feel tired because of all the things they want to do, who hold in natural bodily functions, who always insist on doing things their own way, who always have to “be right”, etc.
I myself often have real difficulty accepting guidance in my life from anyone who I feel (whether or not it is actually true) is not aligned with how I already see myself and where I need to go. While this has helped me avoid things like peer pressure and enabled me to remain “true to myself”, there have been cases where my inability to even slightly question my own self-chosen path kept me from solving certain problems relating to PANS and life in general. Therefore, I benefit from being around people who appreciate my need to be self-directed, but who can help me learn to let go and step into the unknown more, and can allow me to see that accepting the direction and help of others sometimes doesn’t mean I can’t still be myself.
This girl I dated has some of those same control issues, and it drove me crazy because I felt like I was fighting both her and myself at the same time. Plus, I tend to gravitate toward the “teacher” role in life in general (I tutored math before I got my current job), and being around people who seem “unteachable” doesn’t help me feel secure in my own identity. She constantly told me how smart she thought I was, yet I would have *felt* much smarter if instead of the constant lip service, she actually followed in my footsteps and took my advice once in a while. I have found that it’s common among autistic people to have these issues, and she’s also on the spectrum, but I hope there are some who aren’t like that.
Just as importantly–if not more so–I need people who respect all I have been through in my struggle with Lyme/PANS. There was a time where I pointed out to her something that I thought she needed to get checked out about her own body, and eventually she agreed to do it, but after the first appointment where a doctor told her it was “nothing”, she gave up and refused to continue. She had no clue of the perseverance I’ve had to have to get as far as I have with my own health issues. It became so clear when I went to a Lyme group, and was talking to another guy about my age who also has Lyme. He actually found my theories about how my Lyme is affecting me interesting, even if they were different than his own–he was in no way dismissive and he made me feel validated in having taken the time to figure this all out. Whether in a romantic relationship or just a friendship, this is something I really need.
This brings me back to the lack of opportunities to meet others in a purely social context who are also dealing with PANS/PANDAS/Lyme. I have been to Lyme groups in person, but all anyone ever does there is talk about their Lyme, what medications or herbs they are using, and what doctors they are seeing. I’ve only been involved with PANS/PANDAS groups online, never in real life, but they are the same way. And just typing text is nothing like seeing a face, and having someone you can actually hang out with and do something fun when discouraged by chronic health issues.
The mental health issues that come with something like PANS aren’t like lower back pain or skin rashes, one’s personality and cognitive and emotional traits going in have a LOT to do with how brain inflammation manifests itself in emotions, bad habits, etc. Even though PANS can change one’s personality, it also acts as a magnifying lens to one’s own mental weaknesses and brings out pre-existing tendencies big time. So the fact that I was a huge loner math and science nerd before PANS makes my experience fundamentally different, and gives me very different issues, from that of a social butterfly who had a wide circle of friends, or that of an athlete who derived confidence from pushing his or her own physical body. So I don’t just need help with PANS treatment, I need people who understand my bad days but who also can be friends in helping me through the mental/emotional issues around life more broadly.