Why Representation Matters When Living with MS
I first noticed something felt off when I was in my early 20s. I was taking a black-and-white photography class, and as part of our midterm we had to put film on a reel while inside of the development booth. Since you can’t expose the canister to light, you have to do it all by feel and memory, which was impossible for me. My finger pads had been going numb for a few weeks, and eventually I had to drop the class.
At first, I thought my symptoms and fatigue were just my body responding to over-indulgence combined with my packed schedule and long commute. To be on the safe side, I made a doctor’s appointment and got checked out. But after a few stimulus tests turned up no answers, I figured the numbness and fatigue would go away on its own.
A few years passed, and I began noticing other strange symptoms. I felt really sensitive to up and down body movements – if I put my head down or lay down, I felt like I was in freefall. I had to position myself a certain way to avoid a full spin. At this point I was in my mid-20s and working as a full-time creative. I thought maybe the pressures of pursuing my passion were catching up with me. But things continued to get worse. I started to feel ill all the time and was unable to eat. After a scary fall at work, the doctor diagnosed an inner ear infection, which can affect your equilibrium. But that still wasn’t the answer.
At this point, I knew something wasn’t right. It all came to a head one day as I walked to the bank on Hollywood and Vine. Suddenly, out of nowhere, my legs gave out from under me and I hit the ground. No matter how hard I tried, I couldn’t stand up – the bottom half of my body simply refused to respond to my brain. I sat on the curb, trying to tamp down my panic as I waited for a cab to drive me to my mom’s house, where I spent days on the couch furiously hoping to find a doctor who could finally tell me what was wrong. Yet it wasn’t until the fourth or fifth visit to the emergency room that a doctor said the words “multiple sclerosis (MS).”
I had read something about the “MS hug” as they call it (although it feels more like a vice grip), which really connected the dots for me. Imagine you’re wearing something from your childhood, something not meant for an adult body. The more stressed or anxious I got, the tighter that “hug” felt around my rib cage. That was the one symptom I had that didn’t fit any of the other diseases I had researched.
When I was finally diagnosed with MS I felt validated. After nearly six years of knowing something was really wrong and not feeling heard by any doctor I saw, I finally, finally had an answer. Something I could point to and say, “I’m not crazy.” All the times I bailed on going out with my friends because I felt too tired, too sick or too weak – it made sense now. I pushed through MS the entire time. Up until that point, no one had given me any validation that something was wrong.
This all happened in 2009, before social media and other resources were readily available. There were hardly any websites, and no one was openly discussing mental health online. When I did happen across information, the sites didn’t include information about people who looked like me. As a young Black woman, I felt like I already had enough to deal with in my day-to-day life. I didn’t need one more space where somebody could look at me as “less than.” On one hand I was glad for a diagnosis, but on the other, I realized I was trapped forever with a disease that made me feel even more marginalized. My mentality was: I don’t need this. If you’re going to give me a disease, give me something people can identify. That people can see.
I was learning what an “invisible disability” meant, and it spun me into a period of depression, denial and shame around having to admit that I had something not everyone could understand or see. I didn’t have any next steps. But for a long time I didn’t want to talk about it or acknowledge what was happening to me.
The part of MS that I’ve struggled with over and over is the need to rest when the fatigue becomes too much. I have an incredible work ethic, and I’m a very hands-on person. I like to build things, take things apart and figure things out with my hands. MS has taught me quite a bit about what I can and can’t handle, and there are times when my fatigue or other symptoms give me no choice but to pause and focus on my health. MoretoMS.com is a great resource to learn about the disease, especially fatigue, which most people with MS experience. It also has helpful resources for speaking with your doctor so you can advocate for yourself and your needs.
I still grapple with shame sometimes, as I continue to learn about my mind and body with MS. But I work on finding forgiveness and grace. We live in a society that is constantly giving us space to store our unworthiness. With the rise of social media comes the ability to connect more, but there also comes more comparison. Comparison is the stealer of joy. Everyone’s story with MS – and story in general – is different. My advice is: Get to know yourself. Not who you thought you were or who you used to be. Get to know yourself in the present moment. Just rest when it feels overwhelming. As a person who doesn’t heed warning very well, MS has forced me to sit down, slow down and rest.
It’s also forced me to stop and ask for help when I need it. My colleagues have my back, and we don’t make a big deal out of it. If I start slurring or slowing down, they make up the difference. My wife is always making jokes, especially when my MS gives me butter fingers, and it takes some of the power away from the disease. If I’m working on a film project and start to slur my words while reciting lines, the rest of the crew moves on to another scene. They don’t pander; they just check in and don’t over-dramatize it. It is frustrating to have a disease as unpredictable as MS but having people around you who prop you up without comment makes all the difference.
Everyone needs people they can count on, and every group needs representation and support, no matter the type or condition. MS can feel incredibly isolating, but when people are represented, they are seen. When people are seen, they’re heard. When they’re heard, they’re great. That’s what we need. We need to get better – as a country, as a people, as a collective, as a group. And I want to be a part of that within the MS community. And I especially want to give Black women living with MS a voice and safe space. I want to sit here and tell others, “I see you. I am here for you. I hear you.”
At 38 years old, MS has massively humbled my stubbornness. I can’t beat it, but I can learn to live with it and write my story the way I want it to be told. It’s important for everyone living with a chronic condition to be whoever they want and need to be in that moment. If the day is hard, the day is just hard – you don’t have to smile through it. The thing that saves my life every day is that the people around me don’t tell me how to have joy. I didn’t ask to come into the world as Black, female or with MS. But here I am, and even though every day isn’t perfect, I refuse to back down from living the life I want and being the person I want to be.
As a Black woman; entrepreneur; creative; diversity, equity and inclusion thought leader; advocate; and person living with MS, I refuse to be defined by any one thing, and certainly not by my MS. Everything I do and strive for is about making people feel welcome, beautiful and comfortable as they are. As humans, despite our hardships, we always have the option to find praise and beauty in being perfectly imperfect.
Visit MoretoMS.com for information about living with MS and MS fatigue.