Notes on experiencing a long term dis-ease:
Three years feels like a long time to be unwell. One could say it’s been a lot longer than three years, because I experienced extreme disordered eating for quite a while before then. But, three years of living with the fallout, of feeling exhausted from flip flopping between 12 hours of sleep and insomnia, of food reactions and food fear and brain fog and wild mood fluctuations.
Long term illnesses are very expensive financially. Between my parents and I we’ve spent thousands on supplements and out of network specialists after being told by multiple conventional doctors that they could do nothing for me. I feel very lucky to have access to the resources that we do, while also feeling repeatedly brokenhearted and outraged at how badly the U.S healthcare system fails the people who need it the most.
When you’re very unwell in your early 20s, there’s a grieving period for what is often referred to as “the prime of your life”. You know, that time when you’re establishing independence from your family, working for the dream, dating, networking, etc. Right now I cannot do “normal” things that one often does in their 20s, and I’ve needed to make peace with that reality. For a while I refused to accept the limitations, and would override them only to be out for days. Eventually I realized that it’s rarely worth doing that.
There is a roller coaster of feelings involved. There are days where I feel very at peace with the way my life has unfolded and everything that has led up to where I am now. Then there are those when I wake up feeling exhausted and in pain for the 967th day in a row and break down because I don’t want to do this anymore, don’t want to experience another day in a body that feels so entirely out of whack, where I feel overwhelmed, lonely, and behind in life, worried that it will be this way forever. There is no escape option though. Those are the days when I have learned to really slow down and be so soft with those parts, to make it entirely fine to watch my favourite show in bed for as long as is needed. To validate everything that I’m feeling as entirely normal and understandable.
Part 2 up next.