Swellness is a monthlong series exploring the health and wellness stuff no one talks about.
“Go home and have a martini,” the doctor suggested, as if alcohol could cure the pain pulsating down my legs. Is he fucking kidding? I wanted to ask if he prescribed vodka for men’s ailments, too. But I clenched my fists and left his office instead.
Only weeks prior, I celebrated my 21st birthday barhopping in New York City. Now I was struggling to walk. When I did, I felt as if a weighted blanket were smothering me. At night, involuntary jerks jolted me awake; my muscles twitched as if there were bugs squirming beneath my skin.
I was earning my master’s degree in speech-language pathology at Penn State and trying to figure out what was happening inside me. Every couple months, I drove three hours to Philadelphia to see different doctors. I was trapped in a never-ending cycle. Orthopedics referred me to rheumatology, rheumatology directed me to endocrinology, endocrinology sent me to neurology. I bounced around aimlessly until I’d exhausted every branch of medicine without determining where I belonged. On winter break, I flew to a world-renowned diagnostic center known for solving complex cases but left without a diagnosis. I had MRIs, EMGs, X-rays, and even an endoscopy and colonoscopy. I did blood draws so often my veins bulged with scar tissue.
Every day felt like a nightmare, as if I’d woken in someone else’s disabled body. At times I thought my life was over; everything I’d hoped for was ruined. Other times, I buried my fear, ignored my anger, and kept going. I graduated from grad school and met the man who’d become my husband. All the while, I never stopped seeing doctors even when I was told to give up. I knew I had a serious disease and I refused to accept that no one knew what it was.
It took over a decade before I got an actual diagnosis.
On my wedding day, I never imagined having to sit while I said my vows, but that’s what I did under the chuppah to conserve energy. Staying seated during the speeches and dinner helped me rest enough to get out on the dance floor for a few songs, even though my body felt as unstable as if I were missing a leg. We skipped going around to all of the guests’ tables because I simply couldn’t do it. It was heartbreaking to realize I wasn’t the bride I’d always imagined I’d be.
For the next three years, my symptoms remained stable. I was limited in how much I could walk, but I learned what my body was capable of and adjusted my life accordingly, even if it meant sitting while my family enjoyed the park or explored the museum. But as I weaned my second son from breastfeeding, I started having flares every few weeks that weakened me more than ever before. Not only was standing a struggle, sitting upright in a chair was challenging and I’d find my body slumping after a few minutes. Instead of climbing the stairs, I had to scoot up on my bottom. It had taken me a few years to accept that I could participate in some activities with extra sitting breaks, but these flares took away my ability to participate at all.
I became a stay-at-home mother, but fulfilling my family’s needs was becoming consistently more difficult. My husband would shop for food after his workday because I couldn’t stand long enough to do it myself. Changing diapers, prepping meals, dressing the children, and walking my older son into preschool all required more standing than I could endure. His teacher walked him to my car at the end of the day when walking in myself wasn’t possible. I was envious of every mother around me, physically strong and capable of being immersed in their children’s lives. Guilt settled on my shoulders for every playdate and preschool event my children missed when I was unable to take them. The more I imagined the life I thought I’d have, the more I’d tell myself, I can’t do this anymore. I’d repeat these words in my head until I believed there was no possible way to move forward in this body.
There was nothing visually wrong with me, and doctors couldn’t find a reason for my symptoms, so I was judged when I needed acceptance most. “How can someone go undiagnosed for so long?” one friend asked another about me, as if everyone with a chronic disease has an easy diagnostic journey. Without a name for my condition, I was failing to explain why I couldn’t participate in every trip to the playground. As if I had room for any more stress, I worried what others thought of me. Their questions made me feel even more isolated from the rest of the world.
I cried in front of my children daily and yelled when they spilled drinks or left toys strewn across the house. Then I’d quickly hug them, remembering I was stressed by my inability to clean these messes and not by their inability to avoid them. The bathroom floor became my respite. It was the one place I could escape the reality of my physical ailments, my children’s demands, and the feeling that I could crumble at any moment. In the bathroom, I could release the anger, fear, and hopelessness freely. In the fetal position, I cried, I screamed, I asked why me, until I was stable enough to rejoin the world.
One summer, we vacationed two blocks from the beach in Ocean City, New Jersey. Physically, I was at my worst — I couldn’t get out of bed. My mother arranged for a beach-accessible wheelchair, but it was only capable of bringing me to the beach. It couldn’t dress me or carry me outside or shelter me from the heat that weakened me further. I couldn’t even shower without sitting, and the effort it required put me back in bed again. “If you’d just come to the beach, you would feel better,” my mother would say. No one — even those closest to me — could comprehend the breadth of the disability consuming me. In the mornings, I listened to my children’s boisterous voices fade as they left for the beach, only then allowing myself to cry, to scream, and to beg God for help. I don’t think I even believe in God, but I was desperate.
I was seeing different doctors each month. None reflected on my situation deeply enough to find an answer. On the car ride home, I’d break down, yelling at my husband or mother, “How can I go on like this?” I was often told, “Please remain positive.” I hated those words. They suggested there was a reason to be hopeful. “You have absolutely no idea what this is like,” I’d shout. Crying released the disdain I had for the many physicians that ignored my words, dismissing them like a scrap piece of paper destined for the wastebasket. Year after year, my disease went undiagnosed because I was seen as a young, healthy-looking female in a world tainted by gender bias, no matter how many times I pleaded for help or how many doctors I turned to.
“There’s something really wrong with me,” I’d shout. “I can barely walk!” Their response was always akin to suggesting I see a therapist or that I learn to accept the way my body now was. One physician said I looked exotic. He then did a breast exam as if I’d complained of pain in my chest. I hadn’t. Other physicians told me to stop searching. Some treated me for diseases I didn’t have — mitochondrial disease, Lyme disease, and fibromyalgia. “You may never find an answer,” one neurologist told me as he reviewed my normal EMG results.
But then a doctor referred me to a new neurologist. In his office, I wasn’t just a healthy-looking woman — I was a patient who required medical care. For the first time, the lesions on my brain MRI were considered more than just evidence of a migraine. He ordered a lumbar puncture, the test routinely ordered when nonspecific lesions are found. I’d asked about this test many times, but was repeatedly told it wasn’t necessary because brain lesions like mine were normal. The lumbar puncture showed signs of inflammation in my nervous system, finally revealing the answer I’d spent 13 years of my life searching for — all that time, I’d been living with multiple sclerosis.
I’ve since learned that MS can be difficult to diagnose. In some cases, MRIs don’t reveal the number of lesions typically found in MS — as my neurologist explained, smaller lesions can hide in areas not easily seen on an MRI. A lumbar puncture is required when the diagnosis is uncertain and given the few lesions found initially, mine should have been ordered far sooner than the 13 years I had to endure.
At first, I was more furious than I’d ever been: I wouldn’t be able to take a pill and feel better instantly. But after four years and a gradual improvement, I realized the treatment available to me was a gift. It showed me I was capable of calming this disease.
My doctor recommended I receive an infusion of the immunosuppressant Ocrevus every six months to kill the cells responsible for causing MS. Initially, I worsened each time. After a six-hour infusion beginning with Benadryl and steroids to prevent an allergic reaction, where I’d sit there loopy and bored, I’d come home and collapse into bed. For the first two years, after each infusion, it would take a month or two to return to my usual level of walking ability. I contemplated coming off the medicine, even questioning if this diagnosis was correct.
After three years — and six infusions — I slowly started to become stronger. For the first time, I wandered around museums with my family and accompanied them on short hikes. I walked my kids to the playground and volunteered in their classrooms. Using an exercise bike became part of my daily routine. I left a state of depression and embraced a newfound sense of gratitude. For the first time in over a decade, I was excited to be alive.
I still have limitations. I need frequent sitting breaks and can’t go on the long, strenuous hikes that my husband and kids enjoy. My symptoms of MS don’t disappear — they wax and wane haphazardly — but they haven’t worsened to the extent they did without treatment. Occasionally I cry when I yearn for the body I had at 21, the one that carried me across a large college campus and through the bustling streets of New York City. But then I remember the moments of despair on the bathroom floor are in my past — and symptoms have eased enough to allow me to live again.
I used to feel cheated from the loss of my early adulthood, from the traveling I never did, the vacations dampened by physical weakness, and the times my children explored the playground without me. I held on to the anger over the years I wasted searching for an answer and the medical gaslighting I endured. I could carry that anger with me into the rest of my life, but I try not to. In the mornings, when my kids jump into bed to snuggle with me, I hold them tightly and think about my new future — one without endless medical appointments in a body now capable of mothering independently and enjoying life.
As I approach 40, I am more enthusiastic about life now than I have been since I gallivanted around New York City on my 21st birthday. I anticipate the growth of my boys as they develop their soccer skills and move onward toward middle school and beyond. I look forward to visiting Paris and Venice and all the places I wish I’d seen in my 20s, even in an imperfect body. Next year, I’ll celebrate my son’s bar mitzvah, the dance floor welcoming me, now capable of what I wasn’t on my wedding day.
I’m focusing all my energy on ensuring my future is everything I once thought was impossible. Because a second chance is lying in front of me, and I can’t be angry about that.
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