One of the common issues faced by people with chronic illness, especially one that is rare or not well-understood, is that friends pull away. Most of the time, they just talk to you less and less and then not at all. Occasionally, you will have friends who seemingly change overnight into a totally unfamiliar and unsympathetic character. It is incredibly isolating and depressing, leaving the sick person wondering what other ways, besides their illness, they're deficient. I think this contributes to many chronically ill people isolating themselves out of choice and developing social anxiety. After experiencing the loss of several friends, it becomes harder and harder to summon the will (or indeed energy) to seek out connections with new people.
When I became very sick in grad school, I already had a lot of social anxiety issues and shyness to deal with. I tried so hard to join graduate student groups and try to make friends with my colleagues. Unfortunately, my health took a nose-dive just as I was feeling like I was beginning to make some actual friends. After a humiliating (and terrifying) experience in which I fainted and seized during class and hit a wall in the process of falling, causing a black eye and a nosebleed that lasted for several hours, no one really wanted to talk to me. When I came back after a week's absence, they either pretended like nothing was amiss or cautiously asked "Are you feeling better?" Social conventions dictated that I say "yes" despite this not being the case, and after I did, they would inevitably make some joke about it and then proceed to ignore me. I left grad school with a total of zero friends, and felt like crying when I saw my colleagues having lunch together or talking about plans to get together over the weekend. But of course crying or inviting myself would have made me more of a freak, so I made myself as invisible as possible.
Some people will be much more confrontational. For example, several years ago when I admittedly had a bit of a meltdown and cried and complained to my best friend that I felt miserable all the time, she just said "Why do you always act like your problems are so much worse than everyone else's?" That moment will forever stick in my memory. I felt betrayed, abandoned, and guilty.
I have been fortunate in the last year or so to meet people who are more open and who also have long-term physical or mental health conditions. At first, I was incredibly relieved and talked about things with them that I hadn't voiced to anyone other than my doctor and my mom. They could really relate to me, and that was incredible to me.
And yet.
Some of them still pulled away and acted with veiled hostility when I was unable to physically do something. You see, I love hiking, and I joined a hiking club in my area in order to meet new people and stop being so isolated. It was through this group that I met a lady who had a similar chronic condition, and I felt we really bonded. Once, my heart was going too fast to go up a steep trail (I'm talking topping at 240 bpm and struggling to stay conscious), so I told the group I would sit and wait for them while they went to the summit and back. She waited with me, and I was incredibly touched. We then baby-stepped it to the top together. It was absolutely amazing. I have rarely encountered that kind of compassion even from family members. But then... she began telling me that I just needed to do more climbing and exercise more and I would get stronger quickly. Carrying a heavy pack for several days through the mountains was completely doable for me. My heart sank. I told her that I already work out 5-6 days a week and have not seen an improvement in my heart rate or chest pain. I simply am not able to push harder and get stronger like normal people. She replied with something to the effect that, well, SHE had been able to do it and was seeing improvement pretty fast.
"But," I replied, "My situation is different." My cardiologists have said I may or may not get better. They have warned me against doing too much physical activity. If they knew I'd let my heart rate get that high, they'd probably slap me. Coupled with my arrhythmia, that is stroke territory.
"I'd really like to someday..." is where I kind of trailed off. Sadly, we haven't talked in several weeks.
It's easy enough to understand why "normal" people don't want to associate with sick people. We are unpredictable and social liabilities. Plus, for some reason they don't know how to act around us, as if we are not human just like them. But that I can accept. People are ignorant and afraid of the unknown. I daresay it's the same sentiment that fuels a lot of homophobia and racism. What is more difficult, at least for me, is dealing with someone who is also sick who discounts your illness and withdraws. It's heartbreaking for me. I understand that the rationale is "I got better so you can too" but it seems so callous, especially considering we don't have the same illness. Everyone is different--even two people with POTS can have two wildly varying cases.
I haven't found a solution yet. One of the few friends I have left said "She's not a friend! Don't talk to her anymore. It's not worth it." But is it that black-and-white? At what point should we just throw in the towel? I don't know. I do know that I have a widening pool of acquaintances and a shrinking group of true friends. Even though I'm an introvert through and through, that's regrettable for me. I'm not ready to give up on establishing meaningful friendships with people, but every time something like this happens, it feels like I put up another mental barrier.
