Invisible Impostor
Have you ever experienced Impostor Syndrome?
It's a common mental phenomenon where someone feels like a "fraud," or like they have not earned their position in life. You feel as if everyone around you knows more, or deserves it more, and you worry that you will be "unmasked" as someone who does not belong there.
It seems strange to apply this achievement-based phenomenon to chronic illness, and yet, sometimes the mentality and its analogous insecurities apply. For all the time I spend explaining to other people the concept of "invisible illness," and that there can be more than meets the eye to someone's health, sometimes I need to explain it to myself. There are times when I feel like an impostor in my invisible illness. In some moments, I wonder, "Could I really be experiencing all of these diagnoses?" On days that I feel less symptomatic I think, "Maybe it is all in my head," and on the rough days, I inquire, "Is this normal? Maybe everyone feels this way and they can just handle it better. What if I'm just weak, or a drama queen?" Sometimes, it might be flat out denial, but sometimes it feels like a strange iteration of Impostor Syndrome.
There are multiple factors that seem to contribute to this doubt mentality. Certainly, years of misdiagnosis and being ignored by medical professionals is the largest factor. I cannot even begin to count how many health professionals dismissed me and my medical concerns over the years. "Everything looks normal" and "there's nothing wrong with you" and "it's probably anxiety" and "oh you're just flexible because you're a gymnast" and "are you sure you don't just have mono?" and "oh some cultures just have more hair growth" and "nah you're skin's not stretchy enough to have EDS" and "there's some inflammation but I don't see any reason why you're in as much pain as you claim" and "stand up straighter, then maybe you wouldn't have scoliosis!"
When the people you trust with your health continuously tell you that nothing can possibly be wrong, you begin to internalize it. And when you finally do get the answers and diagnoses, a little voice behind the flood of relief starts to pipe up, saying "Are you sure? Can this be? Were all those other doctors just oblivious? Maybe this one is wrong."
Another contributing factor, especially in my case, is a sense of disbelief, even denial. Being chronically ill is not the life I envisioned for myself, and it does not align with my goals. So maybe my expert doctors who finally are helping improve my function are wrong. After all, I am not a sickly person, so how could I be this...sick?
Of course, there's the social media aspect. While there is an amazing benefit to being able to connect and share resources and support with people fighting the same battles, there are drawbacks to the social aspect of chronic illness. Try as I might to not compare myself to others, it is sometimes difficult to remember that each presentation is unique. It can be in the form of seeing others with the same conditions who seem less able, and feeling like my place in the community cannot be as important as their place in the community. This insecurity is only amplified by the current movement to "out the fakers," based simply on their social media presence, and without knowing them as individuals. I worry that people in the community will think I'm just too functional to be dealing with as many symptoms and conditions as I do, even when I know I have never been anything short of honest. But it can also come in the form of seeing people with the same conditions who are functioning better than I am, leaving me wondering if I am putting in enough effort to my health, despite my knowledge that I do all I can.
That's the funny thing about impostor syndrome. Your knowledge of the facts does not necessarily inform your feelings.
But there are moments of relief, both external and internal. There's the respite when a new doctor looks at my chart and says, "Wow, you're dealing with a lot. Let's see how I can help you manage this." There are the moments of encouragement from my mom, when she reminds me, "It's not in your head. You DO have a lot going on and you don't feel like your healthy self." There are the moments when I am actively following my health plan and trying to improve my health, when I'm laying in my "upside down" couch position to improve blood perfusion to my brain, or when I do my PT exercises, or I sit on a stool while cooking because my heart rate is going bonkers but I have something I want to achieve. In those moments, I do not doubt my conditions. I know that I have multiple chronic illnesses that I manage as best as I can.
Ultimately, I think we all have these moments, when we are not sure how we got here and whether or not we can handle it. We have it in the workplace, we have it in our social interactions, we have it while working out, and sometimes we have it while sitting on the couch feeling awful. But we need to recognize that our feelings are valid, our experiences are valid, and we are where we are in life because, well, we just are. And that is okay.
It's a common mental phenomenon where someone feels like a "fraud," or like they have not earned their position in life. You feel as if everyone around you knows more, or deserves it more, and you worry that you will be "unmasked" as someone who does not belong there.
It seems strange to apply this achievement-based phenomenon to chronic illness, and yet, sometimes the mentality and its analogous insecurities apply. For all the time I spend explaining to other people the concept of "invisible illness," and that there can be more than meets the eye to someone's health, sometimes I need to explain it to myself. There are times when I feel like an impostor in my invisible illness. In some moments, I wonder, "Could I really be experiencing all of these diagnoses?" On days that I feel less symptomatic I think, "Maybe it is all in my head," and on the rough days, I inquire, "Is this normal? Maybe everyone feels this way and they can just handle it better. What if I'm just weak, or a drama queen?" Sometimes, it might be flat out denial, but sometimes it feels like a strange iteration of Impostor Syndrome.
There are multiple factors that seem to contribute to this doubt mentality. Certainly, years of misdiagnosis and being ignored by medical professionals is the largest factor. I cannot even begin to count how many health professionals dismissed me and my medical concerns over the years. "Everything looks normal" and "there's nothing wrong with you" and "it's probably anxiety" and "oh you're just flexible because you're a gymnast" and "are you sure you don't just have mono?" and "oh some cultures just have more hair growth" and "nah you're skin's not stretchy enough to have EDS" and "there's some inflammation but I don't see any reason why you're in as much pain as you claim" and "stand up straighter, then maybe you wouldn't have scoliosis!"
When the people you trust with your health continuously tell you that nothing can possibly be wrong, you begin to internalize it. And when you finally do get the answers and diagnoses, a little voice behind the flood of relief starts to pipe up, saying "Are you sure? Can this be? Were all those other doctors just oblivious? Maybe this one is wrong."
Another contributing factor, especially in my case, is a sense of disbelief, even denial. Being chronically ill is not the life I envisioned for myself, and it does not align with my goals. So maybe my expert doctors who finally are helping improve my function are wrong. After all, I am not a sickly person, so how could I be this...sick?
Of course, there's the social media aspect. While there is an amazing benefit to being able to connect and share resources and support with people fighting the same battles, there are drawbacks to the social aspect of chronic illness. Try as I might to not compare myself to others, it is sometimes difficult to remember that each presentation is unique. It can be in the form of seeing others with the same conditions who seem less able, and feeling like my place in the community cannot be as important as their place in the community. This insecurity is only amplified by the current movement to "out the fakers," based simply on their social media presence, and without knowing them as individuals. I worry that people in the community will think I'm just too functional to be dealing with as many symptoms and conditions as I do, even when I know I have never been anything short of honest. But it can also come in the form of seeing people with the same conditions who are functioning better than I am, leaving me wondering if I am putting in enough effort to my health, despite my knowledge that I do all I can.
That's the funny thing about impostor syndrome. Your knowledge of the facts does not necessarily inform your feelings.
But there are moments of relief, both external and internal. There's the respite when a new doctor looks at my chart and says, "Wow, you're dealing with a lot. Let's see how I can help you manage this." There are the moments of encouragement from my mom, when she reminds me, "It's not in your head. You DO have a lot going on and you don't feel like your healthy self." There are the moments when I am actively following my health plan and trying to improve my health, when I'm laying in my "upside down" couch position to improve blood perfusion to my brain, or when I do my PT exercises, or I sit on a stool while cooking because my heart rate is going bonkers but I have something I want to achieve. In those moments, I do not doubt my conditions. I know that I have multiple chronic illnesses that I manage as best as I can.
Ultimately, I think we all have these moments, when we are not sure how we got here and whether or not we can handle it. We have it in the workplace, we have it in our social interactions, we have it while working out, and sometimes we have it while sitting on the couch feeling awful. But we need to recognize that our feelings are valid, our experiences are valid, and we are where we are in life because, well, we just are. And that is okay.
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