Life at the Intersection of Fat and Chronically Ill

I am a chronically ill person. My diagnoses include hypermobile Ehlers-Danlos syndrome, fibromyalgia and myofascial pain syndrome. I’m also fat.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The perception that being overweight automatically makes me unhealthy is a pervasive stigma in our society. It is assumed that my challenges come from co-morbidities that can arise from one being overweight. People are always surprised when they find out that aside from the chronic illnesses I have, I am a generally healthy person. I don’t have any of the typical co-morbidities society tells me I should have. Why is that? People of any size can be healthy, plain and simple. 

The main source of frustration for me personally about living at this intersection is that it is assumed I am lazy. It is assumed I don’t want to “recover.” People stubbornly cling to their beliefs that if I was just motivated enough to lose weight, I will be “cured” by virtue of being thin. People fail to understand the concept that there is no magic cure for me, and that the perception they have of “unhealthy” is generally incorrect. People of any size, shape, ethnicity or socioeconomic status can be unhealthy; the reverse is also true. 

I have hypermobile Ehlers-Danlos syndrome. This is a genetic connective tissue disorder. This means that the collagen in my body, the magic substance that keeps our bodies together, is not as robust as “normal” collagen. Collagen is in every part of our bodies. It lives in the tendons and ligaments that are designed to keep our joints in place, in the walls of veins and arteries, in our muscles and internal organs. My joints often dislocate and sublux (partially dislocate). This makes a typical exercise regimen nearly impossible for me.

The answer that most people give me is the ubiquitous “if you’d just take a walk, the pounds will just fall off. It’ll toughen those tendons up and you’ll feel so much better.” The issue is, when I walk, my hip dislocates. I recently had a good day, and walked about a quarter of a kilometer. My hip dislocated, and I spent 10 days in bed trying to recover, as that hip dislocation severely sprained the tendons and ligaments around my hip. Some days I dislocate a knee walking to the kitchen, or sublux an ankle walking down my front steps. When a knee or ankle dislocates or subluxes, a fall inevitably happens, which causes further damage to my already too fragile collagen. I could easily substitute riding a bike, or yoga in this story. No matter what kind of exercise regimen I try, the same thing inevitably happens.

I do not use mobility aids at the minute. My stubbornness tells me to hold out as long as possible, as I know those mobility aids will become a part of my life all too soon, as hEDS is not static – hEDS is degenerative.

The exercise regimen I do use is gentle stretching and strengthening exercises approved by my physiotherapist. I do use some yoga poses, which have been deemed to be more “safe” for my joints. In essence these poses have a lesser chance of causing a dislocation. Do the pounds “fall off” doing this kind of exercise? No, those typically aren’t exercises associated with burning calories. They are safe for my joints though. That’s the most important thing.

Fibromyalgia and myofascial pain syndrome cause very intense pain, beyond the pain from hEDS. When I’m in bed again, it’s because I feel like there are shards of broken glass embedded in muscles that already feel like they’re on fire. My skin becomes so sensitive that the feeling of the water against my skin while showering is agony, and the feeling of anything other than my fuzzy pajamas against my skin feels like sandpaper. Can you imagine going to the gym or taking a walk while feeling like this? This isn’t like being down and out with a nasty case of the common cold, where it may feel like it takes forever to recover, however recovery does eventually come. This is my every day. Some days are better than others, but I am in pain every single day of my life.

This is not to say that I never have “good days” where my pain is at a four or a five out of 10, or I don’t ever walk, or complete exercise of any kind. This is a snapshot overview of my life.

This is to say, be aware when labeling that fat person in the department store, on the plane beside you, waiting in line at the grocery store or in the waiting room of the doctor’s office. That person may have challenges you aren’t aware of. Unless you have the initials M.D. after your name, please do not assume that your advice is welcome. Strangers giving unsolicited weight loss advice in line at the grocery store just serves to make everyone uncomfortable.

Even if that individual does not have health challenges like mine, it’s not OK to judge them. Society already tells us that we do not fit the definition of beauty and worthiness – sometimes a smile, given without judgment, is the greatest gift you can give someone.

Please remember to be kind. Whether people are fat, thin, short, tall, brown, white, rich or poor – please remember that we are above all, people.