I was recently talking to a friend who asked me about something. I knew immediately what this person was talking about. It’s a subconscious state of mind that has slithered into my life outlook. I am sure patients with other chronic and autoimmune conditions deal with it, too: I don’t trust my body.
My first illness had an overtly physical side effect, paralysis. I had to relearn how to do everything – feed myself, write, swim, walk, etc. It took a long time to recover and at a very vulnerable age. My second also had a physically limiting effect. I was “treated” into an eating disorder and, while before diagnosis I dropped weight until I was smaller than the new size 0, after diagnosis I gained 60 pounds in six months and immediately associated insulin with weight gain. Also at a vulnerable age. My resulting behavior caused muscle degeneration, which is common in out-of-control diabetics. I know because at 19 I no longer had the leg strength to mount a horse.
Throughout the ensuing decades, the diagnoses continued. At this point, I have fixed my leg muscles, but I still have back pain – there is a residual 20% weakness on my left side from the paralysis – I need surgery in both of my eyes, and in both of my hands (if you look in the dictionary, you will see my picture next to the definition of stubborn) – and I can feel how hard my broken organs have to work to keep me functional, especially at my current weight. All of this makes it so I am living in a perpetual state of waiting for the next shoe to drop. I have quite a closet full by now.
I can think of two examples where this state of mind has invaded my daily life. First, I just don’t feel steady on my feet. I have never fallen, but I go out of my way to avoid physical challenges where I don’t think my body can succeed. I am not talking about exercise. More like things where it will be too dark for my cataracts or hiking, where I don’t think my legs or my diabetes can keep up.
Once several years ago, while I was visiting my family in the winter, we had an abrupt change in plans – we were going to unexpectedly go sledding. This caused immediate panic. For someone who doesn’t trust her physical self, a trip to a snowy, icy hill without the time to check out the lay of the land (literally) and plan how to approach it caused trepidation, fear, and self-consciousness. My conditions are invisible and I didn’t want my differentness on display in a way I didn’t choose. So, I also turned a little sullen and bitchy. The thing that saved me was that the littlest was terrified. With parents encouraging them to try it, they clung to me and we sat at the top of the hill on a freezing plastic sled watching the others and waiting for them to finish.
The second example is not episodic, but psychological. I don’t trust. Anyone*, not completely, anyway. If I can’t trust my own self not to hurt me, how can I trust others? I am blessed to have a handful of very close friends and chosen family. The one thing they all have common is time. The newest comer to the group has been in my life for about a decade. They have proven themselves. They have stayed around even though they have seen me at my worst, or at least what I have allowed them to see of my worst. (Some have been around so long that they knew me before I had a chance to build my extensive and detrimental control.).
The worst part of this is that it has been a major factor in my (in)ability to build romantic relationships. If I can only build close relationships through long tenure, it kind of dooms my prospects. Most people aren’t that patient. Add to that the tendency to run when things get emotional (a whole other problem). Ask my friends how often I have expressed how I feel about them. In some cases, never. They know. I know they know. I am sure it would be nice to hear, but that’s just not me. To be fair to myself, I am getting better, but tearing down walls is a very slow process. The pandemic doesn’t help.
Most of the chronic and autoimmune patients I know have managed to have happy, supportive romantic relationships, and I am happy for them. I have never had a discussion about how lack of trust in our bodies has manifested for them in physical situations. Perhaps my issues have something to do with how long I’ve been bracing for shoes. Whatever the reason, I know I’m not alone. Since we have lost at least a measure of trust in our bodies, all of us chronic and autoimmune patients seem always to be bracing for more shoes to drop.
*To all of my friends and family who read this post, please understand that I trust you as much as I am capable of trusting.