When the curse of ‘it could be worse’ leads to imposter syndrome

I was approved for long term disability from my employer’s insurance company. When meeting with the HR department and they told me that it would be shocking if I wasn’t. I thought that this would be a sigh of relief. If that was true, why do I feel like I am faking it?

It should be an elephant sized weight off my shoulders. Although, it is indeed these things, it is also something entirely different. I had expected a fight. Afterall, isn’t that the way of insurance companies? They usually deny everything and only begrudgingly agree to pay out claims.

Having the scheduled call with my new Case Manager was not what I had geared up for. In preparing for the call, I lamented that I “sound normal, so they won’t take me seriously”.  Can you say, “internalized ableism”??? Consequently, I am the only case of Hypertrophic Olivary Degeneration that they had ever seen. She was quite lovely, and I am thankful that she is on my team now.  

…but other people have it so much worse! Are you sure you’re not faking being disabled?

I met with my neurologist to satisfy a short-term disability requirement. This was the point that we started talking about long term disability. I looked him in the eye and asked him, “Doc, do you think that I am faking this?”  It wasn’t meant to be a leading question. I still see the look on his face, and the look on my husband’s face in those following precious, silent seconds. “No. You can’t fake MRI’s.” 

The question was completely ridiculous. Do other people gaslight themselves like this, I wonder? I live in this body, along with this brain every day.  It wasn’t always like this.  I know that there were many years that I felt ‘normal’. 

Well…at least normal-ish.  It is time to take a deep dive into why this feeling of faking disability keeps popping up. Where does one learn to not trust themselves and what they are feeling?

How did we get here? How did I start feeling like I was faking it?

I thought all the way back to fifth grade.  I was ten years old and at a new school. My father had remarried about a year earlier, and we had moved to a new town.  I don’t recall ever being ill before. But this time, I was out of school for many weeks. I remember being taken to an urgent care facility by the time I was out of school for a week or so to see what was wrong with me. They took x-rays, made me spit phlegm into a cup, and told my father that I had bronchitis. 

I was given Amoxicillin, and the doctor told my father that I needed to rest, drink a lot of fluids, and stay home from school until I was better, but I did not improve after a week of medication. I was made to go to school, and sent right back home by the nurse, who clocked my temperature of over 100 degrees. Whether this was intentional or not, I will never know. I wasn’t just trying to skip school. They made me feel that I was ‘faking’ it.  

Still not improving…

After another week or so, I asked to stay at my mom’s house. There were four other kids at my dad’s house, and I could be the center of attention at my mom’s. Of course, no parents stayed home with me, as they were all employed and couldn’t risk losing their jobs.  It was the eighties, and things were very different back then. 

As I continued to not make any improvements, my mom took me to the doctor again. More x-rays were taken, more phlegm analyzed, and the discovery that pneumonia had taken hold. I was then in the middle of a divorced parent argument.  Dad didn’t understand why I had to go back to the doctor and assumed that Mom just wanted to make him pay more money to figure out what was already known. 

The kid caught in the middle believed that she must be faking this. All in all, I believe that I missed over a month of school that year. Of course, in my attempts to make myself smaller and less of a burden, my timeline may be distorted 36 years later.

Imagine how horrible I felt when I had contracted bronchitis again the next year.  I did everything I could to not feel like a faker again. “Do you want to go to school” was the daily query.  It was treated as if the virus was a choice that I kept choosing. Parents words can have a lifetime of consequence.

Childhood experiences can affect our entire lives

Looking to my near past as an adult, I see this pattern all over my history. Going to work during a migraine and never complaining. Thinking that it was some sort of badge of honor to work through tremendous amounts of pain.  I had surgery to remove an osteochondroma from my tibia on a Friday and returned to work the following Monday.  

Having an emergency cesarean section to deliver my child, and returning to working a few weeks later, albeit from home. I returned to the office after four weeks, instead of the generally accepted 6 weeks that my OB suggested. I was earning my invisible ‘Most Valuable Team Player’ awards.  The funny thing is, I was never the ‘employee of the month’. My performance reviews were stellar. My reward was my paycheck.

Peeling back the layers of the onion and finding anxiety

I grew up in a high demand religion. That fostered the self-gaslighting skills. One of the beliefs of that religion is that people with disabilities were less valiant in the spirit world (before we were granted bodies and born on to this planet), and that these spirits wanted so badly to come to earth that they agreed to their less than perfect bodies.

I no longer ascribe to this religion, but many of my family still do. You can’t offend people if you speak in hushed tones behind their backs.  “Oh, the poor thing, but you know that they chose this in the spirit world.”  Only the valiant are rewarded with perfect health situations.  

I wonder if these toxic teachings are still lurking in the back of my mind. As human beings, we are always searching for meanings and connections. It is far more difficult to disabuse myself of these notions than I assumed.  Do I gaslight myself as a defense mechanism? Does that younger version of me believe that she is less than because her brain is not well?  

You do you!

Please do not mistake me, I am all for everyone choosing what they want to believe in, or nothing at all!  I am simply trying to figure out why I am consistently gaslighting myself around my HOD symptoms, and my CCM symptoms. From the depths of my soul, I hope that no one else struggles with believing what their bodies tell them. It can be (and is) a very miserable head space to occupy.

Now that I believe that I have found the culprit, I hope to be able to grow larger than that belief the next time this comes up. I hope to be able to back that belief into a corner and figuratively sweep it completely out of my consciousness. I hope that we can all start having more care and concern for ourselves and honor our authentic selves. There is no need for us to pile on and gaslight ourselves. Let’s all start believing ourselves and each other, and stop accusing others of faking disability.

Christina Coates was diagnosed with unilateral HOD after brain surgery to remove a cavernous malformation on her cerebellum, 4th ventricle adjacent.  Christina does not have ataxia, and often feels like things could be ‘so much worse’.  This leads to a crippling case of imposter syndrome.  She often wonders how she can speak for the HOD community when she can frequently ‘pass’ as able-bodied.  She speaks on this topic in hopes of relating to those in the community who have similar feelings.

Now it’s your turn!  Do you ever feel like you aren’t that bad?  Tell us in the comments.  Better yet, why not share your story with us?  We can help you!  Reach out to us at ContactUs@hodassoc.org, and we can help polish your story into a masterpiece!