By Ashley Brooks, as told to Sonya Collins
I was officially diagnosed with myasthenia gravis (MG) in April 2017. I was studying to be a respiratory therapist at Georgia State University, and that's when I learned about the disease. I'd been having signs of it myself, but I'd been ignoring them. I thought I just wasn't eating right or getting enough sleep, or I was just stressed.
But then we watched a video that showed a woman with MG. That's when the alarm bells started going off in my head. I had some of those same symptoms.
It looked like I'd had a stroke. My eyes were droopy. At the end of the day, I couldn't talk. I slurred my words. I couldn't climb stairs. Once, I was out to dinner and couldn't chew my steak. It was like my facial muscles were too weak. I felt like I had cinder blocks tied to my muscles.
So I went to the doctor, and I said, "I think I have MG."
I think this may happen to a lot of people of color: They completely dismissed my symptoms. The doctor said, "I doubt that's what you have. You're young. You're healthy. You don't have anything else going on. I doubt you have MG."
But they ran tests anyway and they came back positive for MG.
As a person of color with a chronic condition, there are some unique challenges.
We Get Dismissed Sometimes
There are a lot of misconceptions about Black people and pain. I've been in the emergency room and heard it said or implied that I don't feel pain or that my pain tolerance is higher as a person of color.
I've had complete open chest surgery – a thymectomy – for my MG. It's very painful to have your chest cracked open. But when I was seeking help with pain management after that surgery, they insinuated that I was drug seeking.
In order to prove my symptoms and pain are real, I prepare for doctors' appointments like I'm preparing for a test. I have all my documentation and a log of all the symptoms I'm having. I make sure I'm very prepared.
Claiming Your Condition
There's a lot of stigma in the Black community about admitting you have a health condition. When I talk about having a chronic illness, people will say to me, "Don't claim that" or "Why would you tell people that?"
They want you to hide it or be strong and fit the stereotype of the strong Black woman.
Related to that, there's also stigma and shame in the Black community in seeking therapy. Just the other day, I was telling a couple of co-workers who are Black that I go to therapy. Their response was shock, like, "You go to therapy?!"
It's probably easier said than done, but you just have to drown out all that noise and see a therapist the way you would any other doctor. You go to a neuromuscular specialist for neuromuscular disorders, like MG, and you go to a mental health specialist, like a therapist, for your mental health. So I encourage Black people who are newly diagnosed with this condition, because it's a lot to process and it can make you depressed or anxious. Ignore what other people say about therapy and get the help you need.
All of this is why it's huge for me when I hear people sharing their stories about MG, because in my community, it's frowned upon to talk about having a chronic illness.
Shortly after I was diagnosed, I was at a meeting of my sorority – Alpha Kappa Alpha Sorority Inc., a historically Black sorority. We were supposed to introduce ourselves and share an interesting fact, so I said I have a rare disease called myasthenia gravis. Would you believe that someone else in the room stood up and said, "I do, too"?
She became my mentor. She was like a big sister. She's older than me and had already had it for a couple of years. She'd had surgery and been on treatments. I'll always give her credit for how I was able to attack this monster. She recommended the neurologist I now use. She gave me resources, tools, contacts, and a wealth of knowledge and insight.
Build Your Support System
Besides therapy and a mentor, if you can find one, here are some other ways you can set yourself up for success with MG.
Assign someone to be your advocate. Sometimes, when I'm having a lot of symptoms, I can't talk or express my needs. So my sister speaks for me. She understands my condition and can advocate for me. I feel more empowered when I bring her to appointments. I feel it makes a difference when care providers see I'm cared for, that I'm loved.
Find a support group. You can find groups to choose from through MG United, the Myasthenia Gravis Foundation of America, and the National Organization for Rare Disorders (NORD).
Get a doctor you feel cares for you. I love my doctor. My doctor is my biggest advocate. He really fights for me.
This support team is everything. If you have a great doctor, people who can advocate for you, and people you can lean on, it helps.
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Photo Credit: Tetra images/Getty Images
SOURCE:
Ashley Brooks.
