Coming out (as chronically ill...)
As a lesbian, I've had to "come out" many times in my life. Sometimes it was a big deal (the first time I told my friends in high school) and sometimes incredibly hard (finally telling my dad 10 years later.). Since I don't look like the stereotypical "butch" lesbian, I sometimes even have to come out to other gay people. It is sometimes joyous, sometimes heart wrenching and sometimes just annoying. Nevertheless it is something that has made me braver over the years and more resolved in my sense of myself. I am who I am, take it or leave it. I can still remember the excitement and relief of moving from my small rural town to NYC and finally feeling like I could be accepted without fear or shame. As many people who are first coming out can attest, I was very wrapped up in that identity for a few years. I was thrilled to have other friends like me, to learn about LGBT history, to be involved in gay rights campaigns... to learn about, celebrate and love this part of me that I had hidden for so long.
I also started having my first major Crohn's flare ups that first year of college. If I spent half of my time absorbed in my queer identity, I spent the other half in emergency rooms, in doctors offices and on bathroom floors. I pushed through so many flares to maintain a sense of normalcy at the expense of my own self care. And worst of all, I rarely told the truth to anyone about what was going on in my body. After all... I didn't look sick.
It's been over ten years since I was first diagnosed and I am only now beginning to "come out" as chronically ill. I would cringe with shame if I had hidden my sexuality the same way I have hidden my illness for all of these years. I have lied in jobs when I have had to miss work or cancel dates. I stopped wearing clothes that show the scar from my bowel resection. Just this past year I deleted all of the prior social media posts that mentioned my illness because I was afraid the job I was applying for wouldn't hire me. My biggest infraction, however, is that I simply stayed silent.
I have been thinking about the reasons why it has taken me so long to share my reality and like most things, there are many layers.
Coming out as chronically ill meant I was chronically ill...as in forever and always. I think many of us have a secret hope that we will one day be cured or at least find ourselves in a lengthy remission. There are so many stories out there of other people curing themselves naturally or overcoming the odds. Which is great, but we also have to remember that most diseases exist on a spectrum from mild to severe and all bodies are different. I have been in and out of the hospital since I was a child, I have had a surgery, blood transfusions and have been near death because of my illness. I have been on more medications than I can remember and the after effects of those will be a part of my life forever, regardless of any potential remission. I am finally ready to admit to myself that chronic means forever. And that doesn't mean I am giving up on my dreams or that I won't continue to try to live a healthy life despite my illness. But it does mean that I can finally accept that this is a significant part of my life and if has shaped the person I have become.
I was afraid that identifying as chronically ill would somehow take away from people living with "actual disabilities." I felt guilty that there were days when my illness didn't affect me and that I could lead a relatively "normal" life. But I've come to realize this kind of thinking is actually incredibly abilist. The disabled community is incredibly diverse, just like any other identity-based community. I'd rather everyone on any spectrum of identity embrace and celebrate it. (And f*ck normalcy.) I still have a lot to learn and will continue to educate myself. There are so many incredible disability activists out there and there are many things that we still need to work on within our own community. We all need to share our stories because it it the only experience we can honestly speak to. As long as we make the space and effort to listen to one another, our own voice will not silence others . I am slowly becoming more comfortable with the idea that sharing my story will only add to the collective strength of our community.
...Side note: One of the most significant impacts of coming out is that I now finally have a community to relate to. I can't imagine what it would be like to not have any gay friends or even any gay people to talk to. But I have gone years without knowing anyone else that has a chronic illness! I have met the most amazing and kind people on Instagram and Tumblr. They do all kinds of rad things that inspire me, but more than anything it helps me know that I am not alone. Chronic illness can be incredibly lonely and exhausting because we are constantly having to explain or defend ourselves to people. I am convinced now that having a supportive community is key to self care and healing.
Crohn's and other digestive diseases aren't sexy. More than that, we live in a society where poo is taboo. It is considered impolite and unladylike to even acknowledge that we "use the restroom" (or any other euphemism for taking a poop.) I have had gastro doctors whisper to me when they have to talk about my anus. Well I am sorry, not sorry, but the reality of my disease is that sometimes I can't stop shitting, sometimes I don't shit for days, a few weeks ago I shit my pants and I throw up a ton. Going to the doctor sometimes requires that things go in my butt and absolutely requires that I talk about my rectum and my guts. So let's get over this shit shame because everyone will be healthier if they start talking about their bowels. (*I feel like I have to say that crohn's is also an autoimmune disease and affects a million other things than just my butt.)
Finally, there is just something about those of us with chronic illnesses that makes us want to smile all the time and say "I'm fine!" Maybe it is because we don't want to make other people feel uncomfortable or maybe it is because we don't want them to pity us. I don't want friends to think they can't rely on me and I don't want bosses to think I can't successfully complete a job. But the reality is my illness will affect my relationships, my work and my life. We have to start acknowledging the complexity of all identities and realize that as much as we may hope, there are no simple solutions. I am not lazy, but I may need to rest more than others. I am incredibly driven, but sometimes I might have to take a day or a week or a month off from work/ school. I love having fun and traveling and being crazy and I also need (and love) to rest and read and lay low for a while. Sometimes I can eat, sometimes I can't. Sometimes I am feel OK, sometimes I don't. But I am an amazing, and complex, human being who is more compassionate, stronger and more resilient because of my experience with illness.
My illness is a part of who I am, but not all of who I am. I refuse to hide it anymore or be ashamed of the choices I make in my life because of it. I will not sacrifice my self care for anyone else's comfort. I refuse to stay silent, or polite or simply smile and say "I'm fine." I promise to tell my own story and speak out on behalf of others living with chronic illnesses.
turnnoffyourmind
jacobvanloon
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theartofmadeline
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