By: Taylor Wiesmann
Imposter Syndrome can show up in many facets of life, but we rarely think of it in conjunction with chronic illness.
Having a chronic illness can cause us to doubt ourselves, especially when our symptoms have been dismissed by family, friends, and healthcare professionals.
If you have ever struggled with Imposter Syndrome, you won't want to miss this inspiring guest blog post by Taylor Wiesmann.
-Linda Bluestein, MD
What is Impostor Syndrome, and How Does It Show Up in Individuals With Chronic Illness?
Impostor Syndrome has become a widely recognized term in professional and academic settings. Traditionally occurring among high achievers, it describes individuals who are unable to internalize and accept their accomplishments despite proven competence, fearing that they’ll eventually be exposed as a fraud. But the self-doubting tendencies of Impostor Syndrome can extend beyond professional settings. In recent years, “Chronic Illness Impostor Syndrome” has become a regular topic of conversation in chronic illness communities, where individuals describe difficulties with believing and validating their own experiences with their illness.
But what exactly does “Chronic Illness Impostor Syndrome” look like in practice? Below are some examples:
Invalidating or minimizing your symptoms: “Maybe my symptoms aren’t real/aren’t actually that bad and I’m just worse at dealing with them than other people are.”
Doubting or questioning your diagnoses: “Maybe the doctor who diagnosed me was wrong and I don’t actually have this condition.”
Thinking you’re not “sick enough” to warrant seeing a doctor/specialist or to pursue treatment.
Comparing yourself to others with your condition: “Since I’m not as sick as Person X, maybe I don’t actually have this condition.” Or, “Person Y has it so much worse than me…I have no right to complain/be upset/etc.”
Invisible illnesses and dynamic disabilities can be especially challenging for those of us who struggle with Impostor Syndrome and self-doubt. If our symptoms or conditions aren’t visible, how can we be sure they’re not just “in our head”? If our conditions or disabilities are dynamic and differ from one moment to the next, how can we trust that they’re real? Additionally, it’s not uncommon for individuals with invisible and dynamic conditions to be invalidated (intentionally or unintentionally) by family, friends, and even medical professionals. All things considered, it’s not hard to see why many of us struggle with believing and staying connected to our own experience!
Impostor Syndrome has shown up in many areas throughout my life – most recently, in diagnosing and managing my medical conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS). In this post, I’ll share grounding and self-validation techniques that have helped me pull myself out of the “Chronic Illness Impostor Syndrome” rabbit hole. I’ll also leave you with thoughts on why Impostor Syndrome doesn’t always have to be seen as your enemy.
Learning About hEDS: “Wait, that’s not normal?”
It’s hard to know whether “your normal” is actually medically normal considering you’ve only ever lived in your own body. Like other EDSers I’ve heard from, I spent the majority of my life thinking that everyone deals with the same symptoms I do. I figured, “This stuff probably happens to everyone – they just don’t talk about it because it’s normal… right?”
It only occurred to me that “my normal” might not actually be medically normal when I first learned about EDS (which was completely by chance)! And, like many of us with “inexplicable” symptoms, I dove into the research. Before pursuing a diagnosis, I wanted to understand not just what EDS looks like, but also what things are supposed to look like in non-EDS folks so I could try to see where I fell along that spectrum. The resources listed at the end of this post were pivotal in both helping me recontextualize “my normal” and quieting that dismissive voice saying these issues were all in my head. These resources also helped me determine a path forward on things such as: which medical professionals to see, what questions to ask, what to listen for in providers’ observations, and symptoms/signs to look out for within myself.
Compiling a List of Symptoms and Signs
Laying out all of your symptoms and signs in one place can help you connect the dots and see the bigger picture rather than viewing each symptom in isolation. For me, this started as a brain dump in Excel which I later categorized based on the associated body part or system (e.g., which joints are hypermobile and/or unstable, skin manifestations, cardiovascular issues, dental/periodontal problems, etc.). In the process, I also created a similar photo album on my phone to consolidate relevant “evidence” (i.e., photos and videos) into a single location.
Originally, I intended to use these repositories during medical appointments. What I didn’t expect was that simply creating these things would open my eyes to the breadth, depth, and frequency of my symptoms, affirming that I was on the right track in investigating things further. It also helped me start to notice trends like co-occurring symptoms and cause-and-effect relationships, such as what triggers a flare.
Documenting Diagnoses, Test Results, and Providers’ Observations
When I feel stuck in the Impostor Syndrome rabbit hole, reflecting on my diagnoses, test results, and providers’ observations helps anchor me to the reality that my body objectively doesn’t function as it should. This documentation can include any evidence that would be helpful to you, such as imaging tests, lab results, and noteworthy excerpts from medical appointments (e.g., providers’ observations that align with the EDS diagnostic criteria). It can even include unsuccessful treatments you’ve tried in the past; for example, I got Botox for TMJ dysfunction and it caused my jaw to subluxate even more. Obviously not the intended effect!
This document isn’t only practical for medical appointments (especially if you’re working towards a diagnosis!) – it can also serve as an objective reminder that your experience is real and deserving of treatment. As a personal example, I recently got MRI Arthrograms on both of my shoulders. Not only did they find labral tears in both shoulders, but the radiologist also noted evidence of capsular laxity – a common occurrence in folks with hEDS. It’s hard(er) to argue with hard evidence!
Trusting Your Intuition
The three approaches mentioned above are what collectively gave me the confidence to pursue an hEDS diagnosis. The more I learned about hEDS, the more I began to see myself in it – though of course, Impostor Syndrome still had me doubting myself every step of the way! Even still, learning the ins and outs of hEDS enabled me to connect the dots between my symptoms/signs, providers’ observations, and my lived experience in order to see the bigger picture, ultimately leading to my formal diagnosis.
However, many of us may not yet have test results or formal diagnoses that point to a definitive problem, yet deep down, we can feel that something in our body is off. Some of us (myself included) may worry, “Will the provider feel like I’m wasting their time if my test results are normal or if my symptoms aren’t ‘severe’?”. It’s an understandable concern, but reframing it in the following ways can be helpful:
On one hand, normal test results can help rule things out and hopefully get us closer to finding the actual problem, so this is not a waste of anyone’s time. If the issue is impacting your life, you have every right to explore it with a provider.
On the other hand, test results don’t always reflect an individual’s experience of their symptoms – especially when it comes to pain. For example, a provider may say that our labs are normal and therefore we “shouldn’t” be experiencing pain. Yet, we still experience pain. You know your body best; normal test results don’t invalidate your lived experience.
The right provider should never make you feel like you are wasting their time. If they do, it might be time to find another provider! (I know this is easier said than done, but it’s a valid reminder because we all deserve to have a supportive medical team.)
Additionally, research on interoception – an individual’s ability to perceive the internal state of their body – has shown that hypermobile individuals have greater interoceptive sensitivity compared to non-hypermobile controls. My takeaway for us bendy folks is that when our body is telling us something isn’t right, we should listen!
Fighting the Urge to Compare
It’s so hard not to compare yourself to someone else who shares your diagnosis. When I find myself doing this, I try to come
back to the idea that someone else’s experience doesn’t invalidate or negate my own. I may not be the most severe case of hEDS that has ever existed, but why should that mean that I’m not deserving of treatment and a better quality of life? If a friend came to me with these feelings, would I dismiss their concerns? Of course not! And considering how differently hEDS/HSD presents in each individual, no two peoples’ experiences are alike; it really is like comparing apples to oranges, as illustrated by this diagram from the Ehlers-Danlos Society.
Acknowledging and Honoring These Feelings
While it may seem counterintuitive, Impostor Syndrome doesn’t always have to
be viewed as our enemy – in fact, it might even be able to teach us something about ourselves. Some of us may have developed these tendencies due to our life experiences, relationships, and/or environments. For example, if we grew up in an environment that dismissed our feelings and invalidated our lived experiences, we may have started questioning and doubting these things ourselves. In other cases, folks may have experienced so much medical gaslighting over the years that they’ve been made to feel like everything is in their heads, even when there is a legitimate medical cause of their symptoms. Whatever your story, I encourage you to reflect on your history within the context of Impostor Syndrome and self-invalidation, because sometimes, they develop as survival mechanisms in an attempt to keep us emotionally safe.
Therapy has been invaluable in helping me process my own history as it can be difficult to gain awareness of these thought patterns on your own. In processing all of this, I’ve been trying to shift my perspective from “working through Impostor Syndrome” to “working with” it. Instead of seeing it as something to conquer, I’ve been trying to acknowledge and honor it when it comes up because it’s an important part of my story that, quite frankly, will likely be around for a while! However, honoring these feelings doesn’t necessarily mean believing in them or giving them power. Rather, we can acknowledge them and hold them with kindness when they show up while actively working on healthier *alternative* thought patterns such as self-validation and grounding ourselves in objectivity.
In writing this post, I can’t help but laugh at the irony; this whole time, Impostor Syndrome has been telling me I’m “not qualified enough” and “not sick enough” to have any business sharing this with the world. It’s becoming clear that managing my Impostor Syndrome will be a perpetual work-in-progress. And you know what? That’s okay. I’m just glad I finally have the tools to put these feelings back in their place. Respectfully, of course. 😊
Resources
The Bendy Bodies podcast! This has easily been the single-most informative AND validating resource throughout my hEDS journey
The hEDS diagnostic criteria checklist and the 2017 EDS international classification article , the latter of which contains more detailed descriptions for some of the more ambiguous diagnostic criteria (e.g., “mild skin hyperextensibility”, “dental crowding and high or narrow palate”) as well as example photos of atrophic scarring in hEDS.
Credible social media accounts, such as:
Scientific journal articles and Google Scholar (using search terms like “hypermobile Ehlers-Danlos Syndrome”/“hEDS” and whatever topic you’re interested in)
EDS support groups on Facebook
Therapy: I can't recommend it highly enough! You can find Chronic Illness Therapists (or any other type of therapist!) near you on Psychology Today’s website.
Taylor Wiesmann is a fellow EDSer who has always been passionate about mental and physical health. She graduated from the University of Washington with a B.S. in Biology and a B.A. in Psychology while gaining clinical research and publication experience under Dr. Marsha Linehan, the creator of Dialectical Behavioral Therapy. Taylor is a big proponent of therapy and personal development, both of which have helped her navigate life with a number of chronic illnesses. She currently resides in Seattle with her husband and cat and enjoys cooking/eating a variety of cuisines, traveling to new places (health permitting), playing the piano, attending live music events, and consuming lots of ice cream.