I was discussing my health problems, somatic and psychological, with my therapist, and after a few minutes she looked at me with a frown. “In the three years I’ve seen you, you’ve shown a lot of avoidance to uncertainty. Why do you need to label what’s going on?”
At that time, my mind drew up a blank. If I could go back in time, I would respond: how do I explain to you so that you understand that I don’t particularly care about the labels, but that other people demand them and will only listen when there are labels?
Part of living with invisible illnesses is that because others cannot see what is going on, the burden then falls on us to articulate our illnesses. And so often, others are not satisfied by our articulations until we can describe whatever we live with using Proper Names that have been validated in the name of science or perfect linear logic.
For example, I’ve always hated doing “physically risky” things—the quotes are there because many of the things I consider physically risky, like trying roller blading or snowboarding, are not things other people consider physically risky. My whole life, my friends and family would roll their eyes when I would refuse to do what they thought were simple if not fun activities. I heard “Stop being such a drama queen,” “why are you so uptight about everything,” and similar things for so long (and I internalized them, but that’s a discussion for another time). My discomfort, anxiety, and fear were not enough.
What I didn’t know how to articulate, and what took me twenty six years to learn how to articulate, is that because of my hypermobility, I am easily injured. For four years, I twisted at least one of my ankles every other month kind of easily injured. Walking down a slight slope in rain can cause me to injure my knees or ankles or both kind of easily injured. I have overly stretchy ligaments and tendons, the cause of which is still being investigated. So yes, I hate trying any new physical activities and no, I am not overreacting.
Now that I can articulate how my physicality has shaped my thought process and behavior, people sometimes respect my dislike of trying new physical activities.
Learning to articulate invisible illnesses is hard and requires a lot of trial-and-error, and as you struggle to figure out the “correct” language, you inevitably come off as a hypochondriac, or in the current language of clinical psychology, as someone with “serious health anxiety”. At the beginning of the session with my therapist, I mentioned that I had experienced elevated mood the previous week. Hypomania, maybe? She looked at me over her glasses with that look in her eyes, and corrected me: what I had was not nearly severe enough to be called hypomania; the terminology for it was cyclothymia. When I mentioned how I thought I had OCD, she corrected me and said that I have OCP, not OCD. She ended the session by stating that anxiety is a serious issue.
What I wanted to say to her but couldn’t yet articulate was that yes, I have “health anxiety” because a lot is going wrong with my body and there aren’t many clear answers. No, I am not trying to make my health problems seem worse than they are. I just want the words to describe what is going on with me because other people expect me to have those words.
The burden of articulation is not something I enjoy, and articulating my illnesses with names isn’t something I want to do. I don’t feel special for having “an identity” built on these names or whatever, nor do they help me understand what is going on with my body. But to get other people to understand and to access the resources I need, it is something I have to do because it is expected of me.
The burden of articulation is a heavy one that requires a lot of work, but like our illnesses, it is work that is hidden and invisible.