In the past several months, I’ve needed to accept several truths:
1. I am now severely ill.
2. It is not possible to predict whether I will get better or worse.
3. If I get worse, I may need a wheelchair, and maybe eventually, a feeding tube and/or a PICC line (a long-term intravenous catheter.)
4. I might die earlier than I expected.
5. I might die without having fulfilled the majority of the things I had intended to do with my life.
I turned 25 this year, and I was diagnosed with Myalgic Encephalomyelitis (ME.)
It took about 3–4 years to finally reach a diagnosis, after endless tests and visits with about a dozen different medical specialists. I felt like I was crazy.
Although I was relieved to figure out what was going on, I hadn’t yet realized what it truly meant to have ME.
Unfortunately, I found out the hard way when my health started suddenly spiraling downhill at 24.
I learned that ME is an awful disease that is often described as worse than cancer. Most people with ME often wish they had gotten cancer instead. Honestly, sometimes I feel that way too.
Cancer has more treatment options, is taken more seriously by health professionals, and many are able to go into remission. ME patients have been subjected to medical gaslighting due to the fact that ME was originally brushed off as a psychosomatic disorder. (ME patients of color experience medical racism on top of this. And for women—medical misogyny.) As a result, it is severely underfunded and under-researched.
There is no way of knowing that my treatments will work.
A few lucky souls have been able to go into remission, but it is rare, and sometimes requires a spine surgery. Many suffer for decades, either with little to no improvement, or with their symptoms worsening by the day.
I’ve tried several medications and supplements, taking as many as 20 pills a day, along with self-injections administered 3 times weekly, and physical therapy. I was supposed to begin monthly IV therapy, but now they have to figure out if I need a spine surgery first.
I tried to find the best doctors available to me, but that meant waiting several weeks at a time in between endless appointments, tests, and test results.
In the beginning, I thought that starting some new medication would do something. I waited for something to happen and was always met with some sort of setback.
I had to trial the meds, and there is a period where your symptoms exponentially get worse before it gets better. It’s called a Herxheimer Reaction. It was supposed to be a sign that it was working, but once that was over, there wasn’t much improvement.
That period when it gets worse was easily the worst I have ever felt in my life. It lasted maybe two weeks. I plunged into such a deep depression, because the pain was so bad that I wanted to just die.
And sometimes, when a new medication was added, I would have to go through that process again.
Then I needed more blood tests, MRIs, biopsies, and neurological tests. Many of them are still pending.
It’s been almost half a year, and I haven’t been able to walk more than a few blocks. I’ve grieved my loss of autonomy, but somehow, transitioning into using mobility aids felt like there would be “no going back.”
Aside from the major and disheartening financial investment, it symbolized a final step into a new way of living that I wasn’t emotionally ready for.
Our world is inherently ableist, from architectural design to the entire process of applying for Disability Benefits (which come with their own set of ridiculous restrictions.) As a result, we all hold a degree of ableism within ourselves. We can feel for disabled people, but no one really thinks about becoming disabled themselves.
And the reality is, it can happen to anybody at any time.
I did not want to be someone’s “disabled wife”—Being on disability wouldn’t allow me to get married anyway. I didn’t want to be the token disabled friend. I did not want to rely on my partner and have him suddenly assume the role as my caretaker. I didn’t want to be looked at with sadness, or pity, or be babied by strangers, or seen with disgust when they see that I can
actually stand up and walk for short periods of time. There is so much shame and denial that comes with it all.
But as the appointments piled up, and one month became five, I realized that I would not be feeling much better anytime soon.
I was skipping family trips and events, I missed seeing my friends, and I just was not able to commute anywhere without being driven. Some days, I could barely get out of bed.
I felt like I was just existing, and not living.
I had a breakdown when my family took me to an art museum.
I wanted to do something with them because I had missed out on so much.
I love museums and galleries with all my being. My partner and I are both artists. But I wasn’t able to see all the exhibits this time. I wasn’t able to walk through without taking multiple breaks. By the time I got home, I developed flu-like symptoms that lasted for three days, including a fever. My legs burned.
My gut screamed at me: “If I had a wheelchair, I could have enjoyed my visit. I could do things and probably even go outside by myself.”
So, I needed to do something about it.
I finally ordered a wheelchair. I was extremely fortunate to be able to use my dad’s FSA to be able to afford it. Not many people have that privilege.
I had been trying to avoid it for so long, but the second I hit that button, I felt so much… Relief.
When I received the package however, I only felt heartache. I felt grief for my lifestyle as I knew it up until that point.
I haven’t had the chance to use it just yet. Using it is only another degree of emotional acceptance to reach. It looms over me, but I think that I will get to it soon enough.
And besides—I’m proud that I took the step towards regaining some sense of independence, regardless of what it does to my conflicting self-image.
Mi Nguyen (she/they) is a Vietnamese-Cambodian, kink-positive disability writer and digital artist. Mi was born and raised in Little Caribbean, Brooklyn, and dabbles in the local NYC hip hop scene, producing events and doing PR work. Mi was diagnosed with myalgic encephalomyelitis, POTS, fibromyalgia, and a few other conditions in their early 20s. Now their work focuses on raising awareness about under researched chronic illnesses and disability rights.