V. H. King's Ink

The thing about chronic illness is that it’s just that: chronic.

It doesn’t go away. There is no cure. I’ve lived with an incomplete understanding of chronic illness for a while. When I was a senior in high school, I was (mis)diagnosed with Type 1 diabetes. What I have is more of a combination of Type 1 and Type 2. It more closely resembles what’s called LADA, or Latent Autoimmune Diabetes in Adults.

Even though I’m technically insulin dependent and was fairly young when I was diagnosed, diabetic symptoms can shift over time. Unfortunately, it’s not uncommon for people like me to be ignored and dismissed by medical professionals. Although I struggled with managing my diabetes for years, I knew there was something else going on. Why was I so tired that I could barely take any of my medications? Why was it such a monumental effort to drag myself to class? Why did I have widespread aches all over my body, regardless of how much I did or didn’t do?

I honestly suspect that my ME/CFS and diabetes surfaced around the same time.

It’s hard to say which came first, but having little support from medical professionals during those first few years certainly didn’t help. Add to that the (major) transition of going away to college and all the challenges that being an 18-year-old with a perpetual existential crisis brings, and–well, it’s pretty obvious now how my health has spiraled over the past decade.

That brings me to where I am today: on my second of three weeks of medical leave and more anxious than I’d like to be about my eventual return to work. One of the hardest things about this is knowing that things won’t get better for me. ME/CFS isn’t necessarily a terminal illness, but it will stay with me for the rest of my life.

While my symptoms might flare and then fade (slightly), I’m never going to have the same functionality that I had before I was ill.

When I go back to work, I know people will ask me if I feel better. They’re going to want me to say yes. They will hope that I’m better–but I won’t be. I may not be in (as much) of a flare, but I will still struggle with fatigue, pain, concentration, and muscle weakness. I will still need my mobility aids. I will still need to stop working. Three weeks off isn’t going to change those things. However, I am hoping the time off will give me a little buffer between now and next spring. Right now, making it until then feels nearly impossible. And that’s scary.

This society is better at understanding acute issues rather than ongoing ones. The medical community is no exception. A broken bone is much easier to treat than a brittle one that could break but, instead, causes a constellation of symptoms that are hard to trace back to a root cause. And regardless of whether there is a root cause or not, what do you do when it can’t be fixed? That’s what so many people struggle with: some things aren’t fixable.

There’s a lack of closure, an ongoing grief, that comes with processing the complexity of having disabilities.

Medical trauma–being consistently dismissed, ignored, and denied care by medical professionals, doesn’t help this. Ableism is rampant in the medical community as much as it is in broader society. And that ableism is something one faces every day. Toxic messages don’t just disappear when one finds a scrap of shelter. Belongingness is harder to come by the more marginalized identities one has, and for me, it often feels like there is no place where I can truly be my whole self. No place, except my own body.

While I was in undergrad–at a small Baptist university in a very white, very Southern town–I resolved to be at home in my own skin. I had to be, because it was the only thing I would always have with me. I had moved too many times to feel like I had friendships to hold on to. I felt my difference from my nuclear family as keenly as I felt estranged from my extended family, regardless of all the smiles and hugs that were showered on me. Would they show the same care if they knew me fully? Could I blame them, if they chose not to? I had been taught that not even God could stand darkness, so what did that mean for my Black skin?

I thought I was getting off track with all of this, but there is a point: my disability is as much a part of me as my Blackness. I am just as disabled as I am Black, as I am queer, as I am believing in God despite everything I was taught. I’m a bit defiant like that. But whatever strength people see in me, they might forget that I am still human. I have my fears and insecurities, regardless of how confident I may seem from the other side of the screen. I constantly worry about being a burden to others, about not living up to my full potential, about disappointing everyone who had such high hopes for me.

I am afraid of not being enough, even while people remind and reassure me that it’s okay to just be.

I struggle with these things daily. Sometimes, it feels like an hourly fight to remember that I am more than expectations of productivity (or stereotypes about the lack thereof). I don’t always win the fight against the lies that I’m not much more than a failure. It’s chronic.

I’ve learned something though, over the last ten years of struggling with my health. Regardless of how much I struggle, no matter how much I succeed, I’m still worth care and compassion. And, the amazing thing is, I’m worthy of this even when I don’t fully believe it. Most wonderful of all, there are those who will show me that care and support unconditionally, and I am forever grateful for them.