Invisible Disease

I’ve been experiencing what would be defined as “writer’s block”. It’s been hard to find the words, and the motivation during this very bleak and slow time. I’ve got another appointment with the surgeon on the 16th, but there has been so much stillness. I’m sure it’s likely amplified for me as I wait, wait and wait some more-but I’ve been here stuck in this difficult time left here to process this open wound. For now I am going to continue to wait and heal. Slowly and surely. 

I’ve been talking with a lot of my close friends about the adversities that come along with having an invisible disease. These past few months I’ve had to advocate for myself in ways I have not yet experienced ever before. Whether it is meeting a new doctor for the first time who isn’t familiar with my condition or my history with OI. Or physically feeling the gaps within our healthcare system. I have utmost respect for front line healthcare providers and I could only imagine the fear they have internalized working during this time. This isn’t going to be a monologue bashing doctors and healthcare providers. I do, however, feel like I’ve fallen through the cracks now that my circumstance is no longer an “emergency”. I want my life back. I want to feel whole again.

 I feel like I’m operating life at 25% capacity. Heightened sensitivities, heightened anxieties, amplified insecurities, feeling like I inconvenience everyone around me. All because of this invisible disease.      

I’ve longed for nomalicy, and been able to push through my desire for isolation. I’ve been connecting with my friends more often, picking up shifts and will be joining the team a bit more regularly at the cafe, all in an attempt to be more accepting of my current situation. The physical pain and discomfort is so much more manageable now, which makes bringing back every day routine easier-yet I still feel like I’m walking through life with a giant third eyeball. Returning to work, answering the questions of coworkers and regular customers about where I’ve been and why I’m back is the exact reason why I feel challenged by ableism and my personal experience with an invisible and extremely uncommon disease. 

I have felt challenged, questioned, and criticized by folks in every avenue of my life investigating where I’ve been and what I’ve been going through. Whether the intention is ill or not, there is a definite tone that comes across when it’s quite clear that someone doesn’t believe you are suffering. It may not be a physically obvious injury, but I assure that you would rather not be in my shoes.

The unknown is uncomfortable for people, and there is and always will be a prejudice against differently abled bodies, and preconceived ideals around what it means to “be sick” or “different” especially when your disease is undetectable to the human eye. This has only been coming up recently as I’ve slowly started to assert myself back into my community; and I assure you that I’m already exhausted.

I’ve said it before on the blog, and I will continue to write about how important I think it is to show kindness towards one and other. Life is heavy at the best of times-and you truly never know the impact you have on another person in a seemingly insignificant moment. Assume the best in others, because I truly believe we’re all just doing the best we can.    

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