During Spokane’s multiple snowpocolypses I had to do a bunch of snow shoveling. The past few years, I have ceded snow maintenance to my partner almost completely. Exercise is a major MCAS trigger for me. But more than that, ice and snow are particularly challenging for my unstable, hypermobile joints. My last severe knee subluxation happened when I slipped on ice. I now suspect I also subluxed my hip during that injury. The hip hurt a lot at the time, enough that urgent care x-rayed it, but there was no obvious damage so the orthopedist dropped it. I’m doing a bit better physically and my partner’s job has become extremely demanding (she’s the boss!), leaving her little time for shoveling. So, I’ve been doing more this winter.
Oh dear, is it grueling! I know that shoveling is hard on the non-disabled, too. After my first round of snow shoveling, I had pretty intense back pain. I talked with my physical therapist who recommended I get a sleigh shovel that allows you to push the snow rather than lift it. WOW! That was a game changer for me! It took some practice and creativity, but I managed to figure out how to use it to maximum benefit. I also use snow cleats for my shoes to prevent slips that could lead to subluxation/dislocation.
Unfortunately, I can’t use the sleigh shovel for tight spaces, so I had to do a bit of shoveling with the traditional shovel during our back-to-back snow storms this past week. That triggered another flare, including migraine and hip pain. I was even worried I had torn something in my hip, the discomfort was so intense. But rather than worry on it, I decided to consult again with my PT.
I recently had to switch PTs because my previous therapist went into pediatric practice. But, I was extremely luck to be able to find another physical therapist with good knowledge of EDS. EDSers can’t really be too choosy about our providers because there just aren’t many who have the expertise. I am now seeing a man. I tend to prefer to see women for a variety of reasons, but I don’t have that choice right now. And, I like this particular man. He is knowledgeable and he has already helped me through a couple of pain flares.
Still, regardless of whether or not I like a physical therapist, the relationship requires a certain amount of vulnerability on my part. And, in our society that kind of vulnerability is shaped by gendered/racialized power dynamics and fatphobia. This struck me as my PT was working on my hip and touching me in my groin area as well as pressing on the muscles in my abdomen. This is a very vulnerable position to be in, both as a survivor and as a fat person. This healing touch could so easily shift into violating touch. In my case, my PT showed me on a model how and where he was going to touch me before initiating that touch–in other words, he negotiated consent. In a previous session, when working on my ribs below my breast, he positioned my own hand over my breast and exerted pressure using my hand. He is clearly well trained about consent and doing PT techniques in areas of the body that are sensitive. As a fat person, I found myself feeling vulnerable about having my by belly fat touched, too. I try to stay clinical, but it is hard not to feel some worry that the person doing the touching will find it either difficult or repulsive to touch my belly fat. The point I’m trying to make is that getting the treatments I need comes with a certain amount of risk, both social and physical.
As a fat zebra, I have some extra challenges in finding good providers. Not only do I have to find a provider who knows about EDS, but I have to find one who will not find my body repulsive or assume I will be lazy/non-compliant. I’ve been fairly lucky in that regard. In the past seven years I’ve seen four physical therapists and two different chiropractors. Only one of the physical therapists seem to have palpable disgust for my body. She was able to help me, despite that, but it required me to put aside the feeling of shame that inevitably emerges when someone finds your body disgusting.
I compartmentalized that shame because I needed the physical therapist’s help. When I returned to my orthopedic surgeon to be re-evaluated he was obviously surprised by my progress and said, “Well, you’ve obviously been compliant.” If I had chosen to stop seeing that PT because of her attitude toward my body, the doctor might have interpreted the delay in my progress as a lack of “compliance” on my part. [I’ll have to write another post about the language of “compliance” in medicine”] Because zebras tend to be high utilizers when it comes to PT, fat zebras bear the burden of finding ways to cope with medical bias. It should be the providers’ responsibility to deliver shame-free care. But as it stands, we risk doctors refusing to treat us, or worse, disbelieving our pain and attributing it to conversion disorder, if we don’t make ourselves vulnerable to bias and shaming in the physical therapy setting.
In a future post, I’ll write a little more about trauma, fatness, and chronic illness. But for now, I’d like to point out that many folks who have experienced violence against their bodies may have a particularly difficult time placing themselves in such a vulnerable position in physical therapy or other medical settings. For my part, I was able to do it for so long because I had so effectively dissociated from my trauma. In fact, I remember very actively choosing to “leave my body” during PT sessions, particularly with the woman I described above. Once I developed different coping mechanisms (through extensive therapy), I have been better able to stay aware of my body’s trauma responses while receiving medical care. Some survivors may not be such fabulous dissociators as I was (a good thing if you ask me). Others don’t have the financial resources to have been able to access such therapy. Both of these things will make PT that much harder to receive.
Let me be a bit expansive here. So far, I’ve focused on the ways fatness and sexual trauma can make us vulnerable in PT settings, but really there are many more ways in which patients can experience vulnerabilty in medical settings. Imagine, for example, how a trans person might experience the scenario I described above in which a PT is doing manual therapy on the groin muscles. Such therapy might require being out with a transphobic therapist. Even if the therapist were trans-affirming, trans folks who experience dysphoria may find touching in that area deeply triggering. Fatphobia, sexism, cis-sexism, ableism, racism, classism, and so many other systems of power shape healthcare and require us to make ourselves vulnerable to stigma, shaming, neglect, and abuse in order to receive the care we need.
Show me a fat zebra, and I’ll show you a trauma survivor. Sometimes that trauma is due to external structural and life factors, other times it is directly related to fatphobic medical abuse and neglect. If you are a fat zebra, and you have the resources, I strongly encourage you to make trauma therapy a part of your treatment plan. The physical and emotional are so deeply intertwined, and in such complicated ways. That is NOT to say that your trauma is the cause of your pain. However, it might be a contributing factor, or even an epigenetic trigger for expression of a pathogenic gene. Trauma therapy can’t unring that epigenetic bell, so to speak. It won’t cure your EDS (or any other chronic illness). But, trauma informed therapy can help you develop coping mechanisms to calm your fight/flight/freeze responses and make you feel less vulnerable when accessing PT, which WILL help your EDS (or other condition). If talk therapy isn’t accessible to you, you may find some free or inexpensive mindfulness resources to work with on your own or with your family/support system.
If you are a healthcare provider or support person, please keep in mind that physical therapy requires vulnerability–social and physical–that some people may not be ready for … may never be ready for. That doesn’t mean they are lazy or “non compliant,” nor does it mean their pain is all in their heads or that they are “attention seeking.” Find ways to support and validate, and if appropriate, encourage trauma-informed interventions to help your loved one modulate her body’s trauma response.