Updated: May 18
For a lot of chronically ill folks life didn't always used to be this way. Life was actually what a lot of people would consider normal. Many of us had lofty goals and dreams and ambitions.
We used to be able to hustle or “work hard”. We used to be able to do a lot of things.
Until one day we just couldn't anymore. Chronic illness awoke from within, and everything changed seemingly overnight. And for some of us, that’s really how it is. One day everything is mostly okay, and then the next we are really sick.
Looking back, most of us are able to see the threads of sickness start to emerge— see that we were heading towards burnout. But it’s always easy to see when you aren’t in the middle of it anymore.
I have personally been chronically ill in some fashion for the better part of my life now. I would go through periods of being mostly okay, and periods of being incredibly sick.
This is due to not being properly informed about conditions in my childhood/teenage years and treating my body like it could do things like everyone else.
I was also the typical high achieving first daughter, so I worked extra hard a lot of the time.
Eventually I got a handle on my chronic issues, but not until I experienced severe burnout. I’m realizing now it was my body physically breaking down and it was also an experience of intense autistic burnout.
Ever since then I’ve been working on trying to manage my health and well being. And more often than I would like to admit, I wish I could just do things like I used to.
I wish I could work until I felt finished with a project like I used to.
I wish I could keep up with house tasks like I used to.
I wish I could go to loud bars with my friends late at night like I used to.
The reality of the situation is when I was doing those things I was ignoring my own needs and it’s a part of why I ended up here.
Living a slower life is required for me. And it’s changed everything. Reckoning with the fact that I am chronically ill and also disabled has been so validating and supportive and also hard accepting that I just can’t do things like I was before.
There is a lot of duality here.
Many call autism a super power or neurodivergence a super power and while there are some strengths, within this world many of us will never experience that reality. This life can be lonely and isolating and hard and frustrating and confusing. Adding any type of change into that present reality can be difficult.
Change is always hard but this change has felt extra tough. Especially as of recently since I have personally had to make a lot of changes for my health.
Sending love to anyone who is feeling this way too.