This is something that, until recent events, I didn’t realize I struggled with.
What Is Imposter Syndrome?
Simply put, it’s an internal feeling of not being as skilled or accomplished as others perceive you to be. Instead of feeling good about compliments that are given, you feel as if you’re under added pressure to make sure they don’t find out what you feel is the truth. That you’re not good enough.
But how does this fit into chronic illness, and specifically EDS? So many of us go years without a correct diagnosis. We’re told by friends, family, coworkers, and even doctors that our symptoms don’t make sense or are all in out minds. In the case of hEDS (Hypermobile Type EDS), there’s not even a genetic marker. We don’t have any kind of definitive test that you can draw our blood and see a positive result. You have to be lucky enough to find a doctor that is familiar with the symptom check list and the Beighton Scale to be able to evaluate your seemingly odd symptom list. EDS is also a spectrum disorder, meaning that there’s a sliding scale of severity of how one’s body is presenting symptoms. Low level may only have a few problem joints, minimal pain, and just be considered double jointed for most of their life. High level may have chronic dislocation in most joints to the point of requiring mobility aids for most of their life and have severe complications from one of the many common comorbids that can come along for the ride.
All of this combined is a perfect storm of circumstances to foster a constant wondering, even if only in the subconscious, if we really have the disorder or if it is truly something to be concerned about. So many of us have come to accept that we will be brushed off or called hypochondriacs, there is a part (no matter how small) that starts to wonder if it’s true.
When It Bleeds Into Socializing
When I first got diagnosed, I went through the expected roller coaster of being relieved and worried about the future of my health. I joined a handful of support groups to help me understand what I was facing and hoped to pick up a few tips and tricks along the way. While I accomplished my goal, my interactions also served to foster that lurking monster in my subconscious. As I wrote in an earlier post, those with chronic illness are frequently participating in Pain Olympics. I caught myself wondering, with so many people that seem to have it much worse than I do…was I even diagnosed correctly?
There were times that I wanted to comment on a social media thread, but instead decided against it because others that were obviously worse than I am had already commented so who was I to think I had any input of worth.
I was officially diagnosed. It was confirmed by someone who just may be the most experienced podiatry surgeon for EDS in the world. I’m in pain every day, need to wear ring splints to do everyday tasks, sublux or dislocate weekly, have bad reactions to adhesive, have a few common comorbids…and yet I’m sitting here wondering if I’m actually sick enough to be worthy of being heard.
THAT…is Imposter Syndrome.
My Personal Struggles
I work in a place where I interact with visitors on a regular basis. Because of that, my hEDS often comes up because someone asks about my ring splints, a mobility device, or I happen to slip something out of joint. I’m not embarrassed to talk about it. In fact, I really enjoy being able to educate people in this syndrome. If I can help just one person understand better, that will ripple outward. This is especially true when I get to meet someone in the medical field that is interested.
On more than a few occasions, some of those conversations lead to suggestions that I try speaking in a more public forum about my disorder. They always have sound reasons. I’ve self-studied extensively, articulate, have real life experience living with it, and manage to elaborate on the most devastating parts of struggling with EDS while maintaining a positive attitude. I’ve had a lot of practice in my workplace to have learned a lot on how to talk about difficult subjects in such a way that people want to listen and learn without shoving so much fluff and glitter into the talk it dilutes the reality of the subject matter. In response, I smile and thank them…and promptly ignore it.
Why do I ignore it? Easy. Imposter Syndrome. I’m only a middle of the spectrum zebra. Sure, I have a lot of very challenging struggles. But I am not in a wheelchair. I don’t have a feeding tube. I don’t have some of the more fatal forms of EDS. I’ve only had a few surgeries. I can still manage without constant pain medication most days (despite it hurts every day it’s not extreme yet). I’ve only self-studied, I’m not a doctor. I could go on and on with some of the ways that others have it worse than I do. I had used all of those examples, and I wondered “Who in the world am I to think that I could even begin to speak about it?” In simple terms? I didn’t think I was “sick enough” to even consider the idea that I could be of use when talking about EDS.
Why Imposter Syndrome Is Real, But Silly
Though Imposter Syndrome is not officially in the DSM, it is often talked about in everything from the art to the medical communities. While there are some we all will meet along our life journey that seem they’ve got all their ducks in a row and trained to perform with perfect synchronicity…most of us will face feeling this way. Despite whether we’re suffering with a chronic illness or asked to perform an important task, there will be a point in most of our lives where we think to ourselves, “Am I good enough?” It’s a self-check mechanism. It helps to keep us from jumping into absurdly dangerous situations or tasks that are out of our abilities. Left unchecked, this mechanism will also serve to keep us from doing things of which we are more than capable due to the fear being allowed to run free.
I ignored a very important fact that I won’t hesitate to regurgitate on any other occasion. Just because someone has it worse than you, does not invalidate your situation, your pain, or your accomplishments. This goes the same for trying to figure out if you’re “sick enough”. Do you have a diagnosis? Do you struggle with the challenges of your health complications? Does your health complication have a negative effect on your daily life? Guess what….YOU’RE SICK ENOUGH.
When I had shared my personal struggles with Imposter Syndrome and the very concept of speaking about hEDS, I had a number of friends poke their nose into my diatribe to remind me of this.
You do not have to be the absolute worst end of the spectrum to share important knowledge and experience. You do not have to be a specialist for your commentary to be of worth. Being at the lower end of the spectrum of any disorder does not mean your struggles are less valid. It’s true that we don’t need to wrap ourselves in our suffering as one would wrap in a blanket during winter. But acknowledgment and acceptance of this can be an important bit for all of us that walk along the road of chronic illness.
So who knows, maybe I’ll end up speaking in a more formal setting in the future. Maybe I’ll just continue the path that I’m currently trudging. But either way, I will try and keep these facts in my mind to help in times I need to tell that subconscious monster that I am sick enough…and I hope you do the same.
I’ll leave you with this quote from one of my favorite novelists, Neil Gaiman:
Some years ago, I was lucky enough invited to a gathering of great and good people: artists and scientists, writers and discoverers of things. And I felt that at any moment they would realise that I didn’t qualify to be there, among these people who had really done things.
On my second or third night there, I was standing at the back of the hall, while a musical entertainment happened, and I started talking to a very nice, polite, elderly gentleman about several things, including our shared first name*. And then he pointed to the hall of people, and said words to the effect of, “I just look at all these people, and I think, what the heck am I doing here? They’ve made amazing things. I just went where I was sent.”
And I said, “Yes. But you were the first man on the moon. I think that counts for something.”
And I felt a bit better. Because if Neil Armstrong felt like an imposter, maybe everyone did. Maybe there weren’t any grown-ups, only people who had worked hard and also got lucky and were slightly out of their depth, all of us doing the best job we could, which is all we can really hope for.
