Each week the Honey newsletter includes a column from women and LGBTQ folks in the South, in collaboration with See Jane Write. This month it’s all about bodies and how they’ve carried us and helped us tell our stories. We’re always looking for more stories from you. Click here to learn more about how to get published.
By Twyla Adkins
The thing about getting sick is that you never see it coming.
This is probably a good thing because who wouldn’t take off running in the other direction? In March 2019, I was minding my own business, working hard at climbing the corporate ladder. Then one day, everything was different. I was different. My vision was blurry and doubled, I couldn’t walk without falling, and it felt like I, or everything around me, was spinning so badly that I couldn’t sit up in the hospital bed. When the Bell’s Palsy hit days later, I went into hiding. I felt damaged and confused as new symptoms continued to develop.
For the next nine months, I hid in shame while undergoing numerous expensive, invasive tests and battling patronizing and systemic racism in the medical community. From being told I had “anxiety” when I was originally discharged from the hospital at the onset of my symptoms, to being told point-blank that while on paper my symptoms matched multiple sclerosis (MS), it was unlikely because “Black people don’t get MS”. Desperately seeking a positive test result because you know in your gut something is wrong, while simultaneously hoping nothing is actually wrong, was a weird place to be. In December of 2019, I was diagnosed with multiple sclerosis at the Mayo Clinic.
If you’re unfamiliar with MS, it’s “an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body,” according to the National Multiple Sclerosis Society. With MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers. Eventually, the disease can cause permanent damage or deterioration of the nerves, and there’s currently no cure for MS. While no experience with MS is the same, common symptoms include pain, fatigue, walking (gait) difficulties, tremors, numbness or tingling, weakness, vertigo and dizziness, vision problems, and coordination and cognitive changes.
The relief of finally knowing what was wrong with me quickly turned into more shame. I’d spent so much time hiding out it was hard to “come out.” I was constantly worrying if others knew my secret whenever I was out in public. Did they notice that I couldn’t hold my balance, or did they just assume I had one too many drinks? Do the other diners notice that I’m spilling more food than I’m eating? I became more and more of a recluse. My husband and I joke that our lives have been organized into two sections: Before MS and After MS. And I desperately wanted to cling to a version of me that didn’t exist anymore. I became filled with self-pity and self-hatred and mourned the life I used to have, the person I used to be. The version of myself that walked down the street with her head high and her hips swaying in intentional motion.
I became anxious that my friends would see me using my mobility aid. I would even go as far as not using it just to avoid the look that strangers give you – when they look at your cane and then look at you before quickly looking away. I held my breath whenever I was asked by complete strangers, “What’s wrong with you?” and gritted my teeth when someone deemed me “too young” to be sick. I still don’t know what that even means. Even when I felt well enough to tolerate going out, I didn’t want to. I felt trapped by my MS secret and hated this stupid body more with every fall or flare-up. I suffered in silence and told myself that I was fine being someone with more doctors than friends.
After my son was born, I wanted to stop being my own frenemy, which meant talking to someone. A mentor helped me see that while I’m not the same person, I was still me. I was just as lovable as before, just now with a lot more swagger in my step. With every protest that someone would notice my slurred speech or the weakness in my legs, she’d say, “So what if they do?” She even challenged me on why I hadn’t gotten a handicapped parking permit yet when I couldn’t even make it through a parking lot without stopping for a break. Having an invisible illness made me worry that I didn’t look “sick enough” and would end up on one of those viral videos being called out by a Karen for taking up a spot. I was afraid to literally take up space!
My first step in extending the olive branch to my post-MS self was daring myself to tell at least one person so I could drop the shame I was carrying. Then I told another and another until I could say, “I have MS” without holding my breath in fear that being a person with a disability made me unlovable. I recognized there was no place in my life for anyone who couldn’t support me for something I have no control over. I’m still learning to accept help when offered, but it’s a relief not to worry about being “found out.” I started actually using the cane and got a handicapped parking permit instead of suffering in silence through long treks to my car. And guess what? The world didn’t end, I know, I know, I’m just as surprised as you are.
When my vision doubles, I let myself feel all the feelings and then accept that some of us are just lucky enough to see the world twice. If I can’t get out of bed because I’m in so much pain, I hug my son closer as we binge-watch Paw Patrol in bed, and I question who’s in charge of Adventure Bay’s budget. Do I still feel 1,000 years old when people almost twice my age walk three times as fast around me? Yes, yes, I do. But, I’m getting better at holding my head high until I eventually get where I’m going.
I’ve stopped seeing my post-MS self as a monster to be locked up. I’m learning to give myself grace and accept that while I’m still me, I’m also not the same person. Now I have dope accessories and unpredictable movements! I’m kidding — kind of. But I am learning that I can be friends with my post-MS self and still love this new me, all the parts of me.
Twyla Adkins is a wellness content writer who helps wellness brands educate and encourage their audiences to keep going through stories that unpack health and wellness in real and meaningful ways. When she’s not writing, you can find her smuggling a book in her bag, making obscure movie references, and planning her next trip. Learn more at www.twylaadkins.com and follow her on Instagram @TheTwylaAdkins.