The Type of Imposter Syndrome We Don’t Talk About

Medical impostor syndrome.

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

Yup, that’s me. I’ve never reached enough “success” to claim I have the impostor syndrome where one may have “a collection of feelings of inadequacy that persist despite evident success,” as defined by Harvard Business Review. But I do have it in a way that’s impacted how I proceed in my medical journey: I have medical impostor syndrome.

There are four key factors identified in impostor syndrome:

1. “I must not fail.”
2. “I feel like a fake.”
3. “It’s all down to luck.”
4. “Success is no big deal.”

I have a genetic syndrome called Ehlers-Danlos syndrome (EDS), which is frequently diagnosed by genetic testing. I, however, have yet to be able to claim a specific gene. Nowadays, that lack of finding may indicate that a patient may have hypermobile Ehlers Danlos Syndrome (hEds) and that is diagnosable by testing the extent of hypermobility.

Since I’m 68, I’m no longer as hypermobile or stretchy as I used to be. That’s normal because as we age, joints tend to stiffen up due to arthritis and other changes. That means I cannot score high enough on the Beighton scale that is the basis of this diagnosis, especially since it tests only certain joints and not the ones I’ve had issues with. The guidelines say that these rules do not apply if you have previously received an EDS diagnosis and are a senior.

So my quickie diagnosis and a subsequent geneticist consultation in 10 years later were all I had so far. When I finally did the genetic testing earlier this year, no genes for Ehlers-Danlos syndrome, Marfans, or Loeys-Dietz syndrome were identified. The geneticist I talked with after the test said he would have tested other possible genes as well, so that story is not finished yet. However, my pocketbook is stretched, as Medicare will not cover testing.

So it’s a “who knows” scenario further complicated by the MRI finding that I do have another condition only found in EDS: Marfans syndrome and two other conditions. Yay, I have a unspecified connective tissue disorder. Don’t I? “Uh, yes,” says the geneticist. But I’m a perfectionist. A certain doc of mine scoffed, “subjective findings.” That doesn’t really impact my care from him but dang, really? I want to do this “right” and his attitude throws me off my perfectionist path to diagnosis.

“I must not fail.” Check.

So I have attained a certain success in my medical journey. I “clearly have a connective tissue disorder within the Ehlers-Danlos syndrome/Loeys-Dietz syndrome spectrum.” It is “an autosomal dominant disorder with an affected person having a 50 percent likelihood of transmission to each of his or her children.” (All in-quotes are from my geneticist’s report.)

So, yup; I got it. But no one in my family appears to have it, nor does my only child. But it can be a mutation and does not have to be inherited.

To recap, got it, but it’s really not normal and my extra conditions are rare even in the EDS community. My symptoms are not as severe as many other patients and makes me feel weird when no one has a similar experience to my specific set of problems.

“I feel like a fake.” Check.

Every time I tell someone I have Ehlers-Danlos syndrome, I sometimes qualify that more as a connective tissue disorder rather than a specific name.

So I hesitate to join medical trials of those diagnosed as hEDS, as I cannot be at my age.

Thus, I have 60 years of medical history of being told it’s all in my head. That I’m just extra sensitive. That I am a hypochondriac. That EDS cannot be cured. That I should ignore it. That whatever specialist I’m talking to has “no clue” and when they may have a clue, they come up with a bizarre take on it such as but “defective collagen means you are looser than normal, how can you have tight muscles?” That I’m crazy.

I have continued to work as I can through all of this, moving to self-employment 20 years ago, but tasked with being the main breadwinner due to my husband’s disabilities. I’ve worked on appearing “normal.” I’ve worked on trying to hide my problems for many years from employers and clients. I’ve worked through so many docs who occasionally end up being the right one to talk to.

“It’s all down to luck.” Check.

At every turn, I do a self-check. Am I being extra sensitive (because I am always that physically)? Am I being alarmist? Is this worth investigating? Can I ignore this? Or will this lead to severe problems later on? Should I go to the emergency room? Will they laugh at me at the emergency room or the next doctor visit? (Yes, that still happens.)

But do I really have something? One doc tells me he believes it’s the new “fad diagnosis” as fibromyalgia was a few years ago (yes, I have also been diagnosed with that one). But is fibromyalgia “real?” Of course it is. As is Ehlers-Danlos syndrome.

“Normal” people do not want such diagnoses. I certainly don’t. I don’t want these problems. I don’t want my last years to be a succession of doctor’s visits and tests. There’s the difference between imposter syndrome as described above: I never wanted this medical condition. I did want a diagnosis, though; I succeeded, much to my dismay. Yet, internalizing that success is still not what I want or need (or is it?) The questions never stop.

“Success is no big deal.” Check.

Sigh.

So what to do about it? Here are the “Overcoming Impostor Syndrome” suggestions from the Harvard Business Review article mentioned above, but rewritten for Ehlers-Danlos syndrome patients:

“Recognize imposter feelings when they emerge.”
“Awareness is the first step to change, so ensure you track these thoughts: what they are and when they emerge.” Just see if this resonates with you and your medical journey.

“Rewrite your mental programs.”
“Remind yourself that it’s normal not to know everything and that you will find out more as you progress.” And realize that the medical professionals you meet also do not know everything. And that they will find out more if you can work with them or if they are open to it. Every enlightened medical person ensures more enlightened doctors. Baby steps.

“Talk about your feelings.”
“There may be others who feel like imposters too.”  Thus, I’m writing this article. You need community support and open discussions with other patients, your docs and a counselor.

“Consider the context.” 
“There may be times when you feel out of your depth, and self-doubt can be a normal reaction. If you catch yourself thinking that you are useless, reframe it: “the fact that I feel useless right now does not mean that I really am.” This is not just normal for Ehlers-Danlos syndrome patients; this is truly descriptive of one’s progress and experience.

“Reframe failure as a learning opportunity.”
Learn from it. What can you do differently? How can you express yourself better to the medical establishment? Also, one thing I can tell you at my age is the one thing I “fail” is medical tests. Every inconclusive medical test may well be an indicator of EDS. Reframe it from “damn, I don’t have that either,” to “let’s read, research more.” Be sure to watch those EDS YouTube videos and webinars.

“Be kind to yourself.”
Tell that voice in your head to “shut up.” You aren’t “crazy,” you aren’t a hypochondriac, and no matter what, you do have worth. Learn to replace those thoughts with some positivity. Find what’s good in your life. I’ve finally decided writing is my way forward.

“Seek support.”
Facebook groups, local support groups (hey, video conferencing can make more things possible), counselors, family members, friends, religious entities. Recognize you may never get the support you deserve, but take every bit of goodness you can find — it can add up.

“Visualize your success.”
This is a hard one. What is “success” in a case of medical impostor syndrome? I’m not sure yet. I can think of a number of small successes, small wins, like a doc who sympathizes, someone who holds open a door for me, a test result that indicates maybe we are on the right path, a spouse or family member who finally “gets it.”

Tell me what constitutes “success” in your medical journey in the comments below. I want to know.