My Sometimes Invisible Disability

CN: general discussion of chronic pain, casual ableism, and specific details of health problems

If you met me in person without any prior introduction and I told you I was disabled, you would be confused. Even if you were somewhat familiar with the range of disabilities that exist, which many abled people are not (there is more to disability than wheelchairs and white canes) it would be pretty difficult for you to pick up just by looking at me that my body operates in a fundamentally different way from abled bodies.

My body looks like a healthy body. I have all my limbs, I don’t use mobility devices of any kind, no casts, no special glasses, no hearing aids, no unusual body configurations or proportions. I walk and move in an average way.

You won’t be able to identify my disability by sight because all of the ways my body is different are completely internal. I typically have pain of varying levels of severity in 10–15 different parts of my body at all times but since pain isn’t visible on its own and it’s such a constant for me, you won’t see it on my face most of the time. When I walk, I’m concentrating on my breathing, on the positioning of my body, and on which muscles are engaging and which ones are relaxing, but none of that mental work is visible. I spend 15–20 hours a week on exercises, appointments, bodywork, extra time to rest, in order to manage my pain, and you would have no way of knowing that just by looking at me.

Unless you happen to see me during a flare that causes me to limp or if you pay close attention to how much my movement slows when I reach a staircase, you would have no way of knowing that I was disabled unless I told you.

This invisibility and the fact that the severity of my pain is constantly shifting puts me in a strange place between disabled and not. It’s easy for me to move back and forth between the world of the able-bodied and the disabled community and fit relatively well in both groups.

But being split between both worlds meant that when my pain crossed the threshold from an ongoing issue to a disability, the people who knew me as physically able had no external indicator that something had changed. They were confused when my needs, boundaries, and behaviors changed dramatically and I barely understood what was happening to me so there wasn’t a simple way to explain the change to them. They still expected me to be able to function in their world even though I couldn’t anymore.

A Game-Changing Tool

In the early winter of 2015, my physical therapist gave me a new tool to try to help with my sacral instability: An SI-belt. I injured my sacrum in the summer, giving it the tendency to twist out of place and cause pain all over my body. When your center is out of whack, everything is out of whack.

The belt was a long piece of light brown fabric with several patches of velcro and buckles to adjust the fit. It went around my waist about an inch below my hips, fitting snugly. I was instructed to wear it while I was doing more physically challenging things but not during resting time.

In addition to helping with stability, the belt dramatically increased my physical stamina for standing. When you bake a cake, it’s good practice to butter and flour the sides of the pan before putting in the cake batter. The butter is to ensure that the cake pops out cleanly after baking but the flour is to give something for the batter to cling to so that it will climb the walls of the pan and rise evenly without collapsing in on itself. Wearing the belt gave my muscles something to brace themselves on, making it way easier to engage them for longer periods of time.

I honestly can’t remember the first time I wore the belt because it became such a normal part of my everyday life. I can barely remember what it was like before I started using it. I wore this belt every single day for more than five years. If I left the house without it, I felt naked, exposed.

If I forgot to wear the brace, my pain would rise quickly. At the beginning of a long shopping trip with my boyfriend, I realized after we left that I hadn’t put my belt on. He asked if I wanted to go back and I really didn’t want to have to go to the trouble so I said no. As soon as I set foot in the linoleum covered concrete floor inside the grocery store, I knew I needed my belt. I suffered through the 20 minutes of my muscles working overtime to combat the terrible floor and lack of support, and we drove home to get it. This simple tool had the ability to dramatically alter what my body was capable of handling.

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But despite its helpfulness, using this tool had an unintentional side effect: The light color of it meant that it stood out against my dark blue jeans, making it highly visible. A person my age doesn’t typically need this kind of physical assistance and many people had never seen an SI belt before. Suddenly, the fact that my body had a problem was visibly on display. My disability had a form of visibility, even if it was just a small one.

It became a regular occurrence for people to notice the belt and ask me about what it was. I’d be walking down the street and a stranger would approach me and say, “Excuse me, what’s that around your waist?” At first, I was confused by why people were asking. Often it seemed as if they wanted to know because they had some kind of pain problem and wanted to know if I was wearing their solution.

But talking to strangers about your health history is tricky and can become invasive and upsetting quickly. I had to gauge how much it was safe to share with them based off what my read on them was: Could I trust them to respect the sensitivity of my medical history or would I be stuck educating them defensively if I shared too much? I did my best to explain the belt in a way that allowed me to avoid telling them that the same problem at play in my sacrum impacted my entire body so I didn’t have to get into that can of worms.

I had people who recognized what it was and tell me that they had to wear it too once. Most of these people spoke of the belt as if it were something you wore for a few months because you had to, and then you get to stop wearing it. One woman said, “Good for you for making sure you wear it,” like I was eating my boring tasting vegetables because it was good for me, rather than as if I was eating the vegetables because bread made me sick. She didn’t seem to understand that I actively suffered if I didn’t wear the belt. Another woman talked about how much she hated the belt because of how horribly unattractive it makes you look, apparently not realizing that she was insulting me by implication.

Another woman approached me to inform me I was wearing the SI-belt incorrectly. She was not completely off-base as there are multiple ways to wear it depending on what condition you’re treating. But even after I told her it was what my physical therapist had instructed me to do and what effectively reduced my pain, she still insisted that it was wrong. I don’t know why it was important to her to know more about my medical condition than I did but there was always a risk of strangers deciding that evaluating my health was their responsibility. One simple acknowledgment of the fact that I had anything medical happening was enough to make it the business of a stranger how I was treating it.

A regular question I fielded was, “How long do you have to wear that thing?” This question got more common as time went on and I disrupted people’s expectations of how injuries work by continuing to wear it just as frequently. The only answer I could manage was, “As long as I need to.”

Honestly, it always felt weird to answer at all because what did it matter to them what my healing timeline was? Would they somehow be negatively impacted if I wore it “too long”? Did they think that if I wasn’t getting better, that must mean I wasn’t taking proper care of myself? To tell the truth, I had no idea if I’d ever get to stop wearing it, or how I would know if it was time to stop. Their questions assumed that the future of my health was known and predictable when it was nothing of the sort.

Just having this simple visible indicator of my disability opened up my body to public commentary and forced me to engage with strangers’ many misconceptions about disability on a daily basis.

Evidence of Strength

Over the years, I used a number of other braces to combat my whole-body instability. When I worked as a cashier, I wore braces on my wrists to protect them from repetitive stress. When I strained the muscle in my forearm, I added a brace to my elbow to prevent it from overextending in either direction. I occasionally needed a brace on my ankle to stabilize it if a misalignment higher up was causing it to pronate more than usual.

But after my cashier job ended and my health improved from the freedom to work from home, my other braces fell out of use for the most part, with the SI-belt the only one left. I could even spend longer chunks of time not wearing it without sacrificing too much standing time. Still, it was my default to wear it whenever I left the house.

In October of 2019, I was working with my physical therapist to figure out a new alignment problem I was facing. Something was causing my sacrum to be more unstable than it had been in a few years but the reason for the change wasn’t clear. My body was developing new tension patterns that didn’t make sense and we were trying to figure out how to get it back on track.

After physical therapy, I went to the waiting room to sit until it was time to walk to my bus stop. Usually, I would’ve used the bathroom before leaving but on this day, for various reasons, I skipped the bathroom, and I was so tired I didn’t realize that I was also skipping changing into my street clothes. My jeans and belt stayed in my purse as I walked to the bus stop in my sweat pants.

Halfway to the bus stop, I realized I wasn’t wearing my belt. I asked myself if I felt safe not wearing it given I had just received an alignment and I didn’t want to lose it. I have to trust my intuition for questions like this because there is no clear-cut guide for what your body can and can’t handle, especially when the answer is constantly changing. Given the recent changes in my condition, I decided a change in treatment also made sense. My intuition said it was okay to wait until I got to the station to put the belt back on.

Once at the station, I went through the motions for the millionth time of wrapping the belt around, looping it through the buckle, and pulling the velcro behind me. But as soon as it settled on my body, I noticed a tightening from the muscles in my hips. My body was reacting negatively to wearing the belt. I took it off right away.

I checked in with my body regularly to make sure the lack of belt was okay. The answer was always yes. Each time I needed to get up for something highly physical, I’d ask myself again, and the answer would be yes. A day without my belt turned into several days which turned into a week, which turned into multiple weeks. I went to the same grocery store I had visited when I forgot my belt years before, with no problem. I carried the belt with me in my bag just in case I suddenly needed it but after I took the belt off at the bus station that day, I didn’t put it back on.

It was freeing to not have this extra step before and after physical activity, not having to worry about its placement under skirts when it shifted around, not having to undo it and redo it for bathroom breaks. It was also a clear sign of my body’s progress at healing and that my strength training that I had been working on for five years was paying off.

A New Form of Vulnerability

As I leaned heavily on the banister to climb onto the bus, hoping the bus driver would notice my body language and wait until I sat down to start driving, hastily grabbing ahold of a pole to keep myself secure until I could sit down, it hit me that without my SI-belt, I had no remaining visible signs of disability.

It was rarely necessary, but for the odd occasion when I wanted to explain or prove my disability to someone, I could point to my belt as evidence. But perhaps more importantly, I knew that my belt was there and I could hope that someone watching me might gain insight into any strange behaviors they noticed in me, like taking a little extra time to cross the street or always using the accessible seating on the bus, if they saw my belt. People rarely examine each other quite that closely but the possibility of that recognition was comforting to me.

The belt had kept me in the perfect place in between invisibly and visibly disabled. My disability was hidden enough that I could pass as abled-bodied most of the time and avoid a lot of social scrutiny as a result but it was visible enough that I had a reason ready to go if someone did scrutinize me. This in-between place had become comfortable for me.

Going without my belt meant having to re-examine my feelings about having a disability that no one would anticipate and that most people haven’t heard of. If I needed or wanted to out myself as disabled to a stranger, their only source of information was what I told them. The words coming out of my mouth were the only proof I had. What if that wasn’t enough?

But then again, the belt hadn’t always been enough either. On the bus one day, I pulled the signal for the next stop and the bus driver kept on driving, distracted by a conversation he was having. I shouted, “Hey! I requested that stop!” There was no response so I stood up and shouted again, “Hey! I want to get off!”

A man in front of me (who was actually disabled himself) spoke up, “Calm down, there’s another stop nearby.” Stunned that I was in the position of defending my right to choose which bus stop I got off at, I simply said, “Well, great! Now I have to walk 3 blocks!”

By which I meant: I intentionally chose this stop because it would require the least physical energy on my part — a resource that is precious and limited for me — and it would require the least amount of time to get to my destination. I intentionally chose this stop and this bus because it gets me to my appointment just a few minutes before its start time. Another stop wouldn’t be the end of the world, but why on earth should I be forced to give up that choice simply because the driver made a mistake and refused to correct it? Why can’t you trust that my decision about which stop is best for me is one based on valid reasons?

The man said, “You’re young. You can walk.”

There was no way in that moment that I could’ve explained to him — a man whose mobility was visibly impaired and who was likely in a lot of pain — that my being young did not guarantee that I could easily walk more than I had planned for and that even if I could walk, that would cost me resources I wanted to use on something else. Being in that strange in-between of disabled and not also meant that “Can you walk?” is not a question that has a straightforward answer for me. I couldn’t say, “No I can’t,” because that wouldn’t have been true. I can walk but even on low pain days, it costs me to do so.

In that instance, my belt did nothing to protect me from what disabled people are constantly coming up against: the societal view that I am not the authority on what my own body is and isn’t capable of. The belt offered me mental reassurance but it didn’t actually overcome the possibility of public scrutiny.

My new exploration of being completely invisibly disabled actually has less to do with a belt and a lot more to do with societal scrutiny that I’ve dealt with since the beginning, belt or no belt. Taking off the belt just calls attention to the vulnerability I’ve felt all along.

This article was originally published on Dec 17, 2019, as “My Disability Is Sometimes Visible” on the No End in Sight Medium Publication.