For those of you who don’t know, a woman named Enedina Stanger, who has EDS (Ehlers-Danlos Syndrome), was recently a contestant on American Ninja Warrior (ANW). Three years ago in 2015, her husband competed in ANW and she was in a wheelchair. Since then, she has worked hard through exercise and diet changes to build up her mobility and stamina and to be able to compete on the course.
Before I discuss my thoughts and feelings on this, some disclaimers. First, everybody is different. Every body is different. EDS is a spectrum disorder, with a range of severities, a range of symptoms and comorbids, and a lot of day-to-day, week-to-week, month-to-month, and year-to-year variability. Second, from what I have read, there have been mixed feelings in the EDS community regarding the media coverage. I’ll touch on more of that in a bit. Finally, I personally don’t have an official diagnosis for my joint issues. This is a whole other issue that I have touched on to an extent in other posts, and I won’t go in-depth on here. But I don’t know whether I officially have EDS. It has been a possibility that has been mentioned, but most of the clinicians I have seen have essentially not seen the point in fully assessing whether I might have it (check out the Ehlers Danlos Society website* for a bit on why the community disagrees with this slightly outdated thinking). I do unquestionably at least fit the criteria for Generalized Hypermobility Spectrum Disorder, which is considered a related disorder that the Ehlers Danlos Society also advocates for, but even that has not quite been an official diagnosis (more on that in a future post).
So, first the clear positives of a woman with EDS being on ANW. It is great for increasing awareness. EDS has been considered a rare disorder for a long time, and EDSers often have a hard time getting a diagnosis because it is not widely known or recognized even among medical professionals. This also means that some doctors will tend to tell patients that they can’t have something like EDS because it’s rare (which is illogical). This kind of thinking has also led to many people now believing that rather than all types of EDS truly being as rare as has long been thought, instead EDS is underrecognized (particularly the Hypermobile type, which is considered the most common). This would mean that there are people out there with EDS who are experiencing problems but because many people, even medical professionals, don’t know a lot about EDS, and even because there is some misinformation out there, these people don’t necessarily get diagnosed. Also, EDS can cause a whole host of symptoms that involve many different systems of the body, meaning EDSers often are seeing multiple specialist who tend to only care about symptoms related to their specific specialty, and so the puzzle pieces may never get put together. Increasing awareness means more people being diagnosed, more people being properly treated, and more people being able to put a name to why they have felt something was different about their body for a long time.
For me, I have in some ways felt like I found a person like me, and there aren’t a lot of them. I certainly am not and never have been as severely affected as Enedina was, and still is. But I do not always know how to explain to people how I have been able to continue to be active when my body feels the way it does. Honestly, it confuses me sometimes. I have chronic pain. I experience frequent subluxations, which are painful by themselves. I also experience what we believe has become chronic inflammation in some joints, likely from the repetitive macro and micro injuries. That inflammation also causes pain, so I often have acute on top of chronic pain in multiple joints at any given time.
Because it is the laxity in my tendons and ligaments that is leading to these problems, the only thing that can really protect my joints are the surrounding muscles. (I have a theory that this is one reason why I often get so many subluxations and injuries during the night, since my muscles are much more relaxed while sleeping or falling asleep than they are during the day.) This means, as I have repeatedly been told by doctors, that the only thing that can really help is strengthening those muscles. What doctors don’t seem to really ‘get’, or at least don’t have a further response to, is that every one of them I came to after I had already been trying for months or years to strengthen these areas on my own. When doctors examine the muscles surrounding different problem joints, they usually find the muscles are quite strong. My muscles are doing just about as much as they can, but they can only do so much to make up for tendons and ligaments that aren’t doing their jobs.
I have ended up feeling often like I am stuck in a weird middle ground. I experience pain and frequent subluxations and injuries. It has forced me to change the kinds of activities that I do, and the way that I do those activities, but it has not stopped me yet from being active. I do worry at times that I will do or am doing longer-term damage by continuing or pushing through, and I have yet to get a clear or useful answer from a doctor or a physical therapist on this question or how to know when to stop. But continuing to be active has also kept me in shape, and kept my muscles in shape, and helped them to do what they can to protect my joints. If I weren’t as active as I am, I have little doubt that I would be in more pain and my joints would be in worse shape. But that doesn’t mean being active isn’t also painful.
Seeing Enedina talk about having chronic pain and frequent subluxations and/or dislocations, and seeing her work hard to gain strength and mobility, made me feel less weird and unexplainable for being an active person with chronic pain. And even having her say, “American Ninja Warrior, it’s going to heal me or kill me.” I often feel like being active is both making me worse and making me better — and it honestly probably is kind of both.
I am grateful that I know Enedina’s story, and grateful that her and her husband have worked to bring awareness to EDS. But unfortunately, whenever the media gets hold of a story like this, there tend to be some drawbacks. It can give people who don’t have EDS and who are not disabled a skewed picture of EDS and of disability. They might think that anyone can do what Enedina did, and not realize that each person is different. They might call it a miracle and forget about all of the hard work Enedina described doing, and all of the pain she went through and continues to go through, to get to where she is. They might not realize how difficult the balancing act is between over- and under-exercising for someone with generalized hypermobility. They might not realize how much variability there can be in symptoms and severity over time, and how much abilities can fluctuate with that.
Also, they might not realize that many, many people live happy and fulfilled lives while in a wheelchair or otherwise disabled. I don’t think very many people would fault Enedina for wanting to regain mobility, but that does not make it possible for everyone, and it does not mean those who can’t are unhappy or feel as though they are not fully participating in life.
Finally, it would be good if the public and media could remember that disability porn is annoying and not helpful. (The media coverage I saw didn’t seem to be quite there to me, but this is always a good reminder.) People with a disability, or people with a chronic illness, are not inspirational for doing normal things. What Enedina has done is amazing because it requires incredibly hard work, because she pushed through pain, and because she stood up and did a thing that would be scary for anyone — competing in front of a live and TV audience on a physically demanding course with a not-negligible risk of injury. She is not cured of EDS, that is not why this story is amazing. Enedina is incredible because she pushed through pain to do a hard thing.
All in all, it feels good to see other people battling pain, fatigue, frequent subluxations, and other symptoms to be active anyways. It helps me feel like I’m not unreasonable to think I can do the things I want to do (like complete a through-hike!), or to want to at least try, and helps me feel validated that just because I am active does not mean I don’t experience pain.
*one mention is here, among other places: Ehlers-Danlos Society: What is EDS?