• Jaz Gray

Rare Disease Day 2020: To the Root

Updated: Jul 6, 2020



This is the first post on my brand new blog. Ayeee!!! In honor of Rare Disease Day, I decided to talk about a topic that has become a more recent reality for me -- therapy!!! Specifically, I ask the question, "What happens when rare (read: extraordinary) women finally begin to reflect?"This will be an ongoing conversation that I hope ya'll will have with me as I continuue this journey. Also, over the coming weeks, I will be backdating some blog posts I've written on other platforms, so that ya'll can find them all in one place... Okay, enjoy my very first post!


Just like that, I burst my own bubble.

In counseling a while back, I told my therapist that I had a problem comparing myself to other women when it came to physical attractiveness. Yes, I know not to compare, it’s the thief of joy, everyone is unique, etcetera etcetera lol. It wasn’t even really the comparison itself that was bothering me though. It was how I allowed this sizing up to change how I felt about myself and how I had intended to interact with another person.


So, I was in a class with a guy I thought was ... interesting (insert sly smile) ... he was making some really thoughtful, passionate point, had his lil square matte black glasses on, fresh out somebody’s barber’s chair. And perhaps it had crossed my mind, you know, maybe I should make a point to speak after class, maybe it could be someth- and then I looked around the room. I counted - 1, 2, 3, 4, 5, 6 - at least six other women in our class checked all the boxes. Smart, nice enough, lots of personality, and all naturally pretty. I thought we had a lot of the same qualities but some key differences. They had no asymmetrical face, no visible signs of illness, no impairments. And almost immediately, I was just not as interested in this guy as I had been a few seconds before. Just like that, I burst my own bubble. I could almost hear the pop. I could almost feel the splat of gum stuck to my nose. Just like that, I figured I don’t really even know this person. He could be a complete jerk, and why was I thinking about my classmate anyway. Tsk, tsk #sorrytothisman. That now fleeting feeling, a barely lit flame, I had pinched right out. Let the heat sizzle between my fingers. Just like that.


"Without any real evidence, you reached the conclusion that you were at the bottom of the list.”

As I came back to myself, sitting on the proverbial and literal therapy couch, I looked up at the brunette psychologist in her flowery maxi skirt, sipping her decaf coffee, and I waited expectantly for her to speak, to offer some kind of guidance. She just looked at me quiscally for a few seconds before responding, “You just took yourself out of the conversation.” “Why did you do that?,” she asked. Umm, I don’t know lady. That’s pretty much why I’m here. ”I was hoping for tips.” I stumbled out. “How to, um, not do that?” “Well, you made an unfair self comparison,” she said with a kind of shoulder shrug. “And without any real evidence, you reached the conclusion that you were at the bottom of the list.”

See, I thought I was “over” this kind of self worth issue. However, my scores on the medical trauma evaluation she had me take next were ... ayem... quite high. I have learned that rare illness has a cumulative effect. For me, this includes both the compounding impact of life threatening surgeries and the confounding impact of external and internalized stigma. I have learned that I have to be very intentional about combating certain lies I’ve created to protect myself. They are no longer serving me well (if they ever did).


What coping mechanisms have you developed over the years to protect yourself from potential pain?

As a tool in my now expanding toolkit, I have gone through the process of writing out distorted facts I’ve believed about myself and then untwisting each by writing next to it what is true. For me, Truth is rooted in what God says. Specifically, in this context, who the most High says I am. So I rewrote my initial list of truths on a sticky note in “I Am” statements, and I stuck the sticky right on the mirror I use to examine myself each morning. My hope is that, over time, I can see myself much more clearly.

People with disorders that are rare (impacting a small smattering of people around the globe) actually make up 5% of the worldwide population. That’s 300 million people total. Each dealing with our unique, yet shared experiences overcoming trauma, sometimes in isolation that can be stifling. However, none of us are alone. YOU are not alone. What coping mechanisms have you developed over the years to protect yourself from potential pain? What has helped? What has had unintended consequences? How deep are you willing to dig to get to the root of it all? In celebration of Rare Disease Day, if you are in need of reframing your circumstances or how you see yourself, due to medical trauma or whatever issues you may have — just try this exercise. Then send me your sticky. I’d love to see it. Let’s encourage each other. We are stronger together.



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