kohal

he / him | sometimes account for sometimes posting

[ukohalmac]

an issue I’ve discovered a lot in the chronic illness & disability community is an intense tension between those with visible & invisible disability.

myself, I am visibly disabled — I have visible deformities due to type-unspecified Ehlers-Danlos Syndrome, a significantly altered unstable gait, and largely use an electric wheelchair to get around.

I entered a discussion recently about medical gaslighting and trauma, and suddenly it was as if some people believed that there was no feasible way that I could have experienced severe gaslighting or negligence because I am visible — that there was no way I had ever been denied healthcare, or access, or any treatment I needed.

I don’t want to complain about how horribly underfunded my local healthcare system, or how doctors are not trained to look beyond acute care, or harp on about bias against minorities in healthcare (for now, I have many many thoughts on this…). My response is largely this:

I was in your shoes once. I was once invisible. Why do you think it is me against you?

[ukohalmac]

I need people to understand this, even though it’s been repeated thousands of times before:

There will always be people who are more disabled than you.

This statement does NOT take away from your experiences and how they have impacted you. This statement does not say that your needs are not as important. This statement is not a personal attack on you.