Chronic Illness

I have been chronically ill for my whole life. The pressures of having to excel as a queer Black femme and over a decade in abusive household, being houseless and with a string of abusive partners forced me to manage my illness as quietly as I could, which compounded it. Right now, I am about 3 months into a diagnosis of Ulcerative Colitis. There isn't a cure and medical doctors have offered me either endless medication or removal of my colon as options for treatment, neither of which personally work for me. 

Western medicine operates in this isolationist way, where a cure for them is just to remove the part of your body that is dis-eased, as opposed to treating things in their context, both historical and environmental. Their solutions? To medicate with drugs whose side effects range from depression to tuberculosis or to remove my colon entirely. And although I respect anyone's decision to address their illness in whatever way makes the most sense to them, these don't work for me and to have doctors literally yell at me when I refuse these options is so profoundly wrong. Especially considering that the studies that are constantly being cited are funded by the same companies who are producing the drugs and stand to profit the most from their use. When the health of any community is tied directly to profit, it is impossible for it to be accessible and equitable whether our healthcare is 'free' or not. Especially as an immigrant of colour, ‘this modern western’ medical industrial complex is touted as being the best in the world, despite the fact that our bodies and our experiences are rarely if ever included in their studies and when they are it is based on experimentation and abuse, Henrietta Lacks and ‘modern gynecology’ as two examples of violent, abuse targeted at Black women that benefited ‘Western science’.

I am still needing to work to support myself which is hard as stress is a primary trigger cause I am still a cash-poor in debt artist & organizer. My partner is amazing at taking care of me as I explore natural options. Trying to find a way to manage the whole 'you don't look sick' ableist bullshit and still exist in capitalism is also so hard. 

With chronic illness, you often operate on a 'hope for the best, but plan for the worst mentality'. You give all that you can to your friends, family and community and then sometimes you can't. You plan for parties and events that you may never be able to show up to. You focus your energy on the things that you hope are the most generous to your community and to your own spirit but sometimes it just isn't enough (I try to still share lots of knowledge on fb, but can rarely reply to messages and I am really sorry for that)

It's hard to talk about illness especially as a Black girl. People, including and most often doctors either dismiss it entirely as exaggeration or they assume that you can no longer do anything or contribute in anyway and then stop asking you to participate in community. When people rage about how writing on the internet isn't activism and people need to actually 'do something', it is such an incredibly abelist framing that excludes sick and disabled folks who are necessarily a part of our community and continue to try our damndest to keep up with the capitalist ethos, namely that you are only as valuable as what you produce'. 

So I share this in solidarity with all my other sick folks who so choose to identify. I share this with those who are hurting and hustling and those who can not even imagine what it would be like to leave the bed. With all the folks who are in debt up to the hundreds of thousands just trying to stay well. In a free world, being alive would not be tied to making money. All life would be a right as there is more than enough to go around to sustain us all and at no one's expense. I am gonna keep fighting and healing in all the ways I can, and continue to try to love and be accountable and grow and transform. The words of my sister Imani rings so loud and true in my mind, ‘Get it how you live’. So often when we have been made sick by our histories and environments, we have to go away for a while and get better and then subject ourselves to the same contexts that made us sick in the first place. If capitalism creates the equation that time is money and healing needs time, it makes wellness a privilege of the elite. For those most marginalized by systemic oppression, we are in desperate need of time, resources and care in such a way that these things don’t come at a cost to the very things that we are trying to protect.

This isn’t a plea for pity or sympathy, but a call to examine a system that leaves us with so few choices no matter how hard we try. I want so much more and so much better for us all.