Why I’ve Given Up On Being Healthy
My mitochondrial disease has no treatment or cure. But after years of focusing on what I can’t do because of my disability, I finally see what I can do — and how I can do it.
"Why did you leave your last full-time position?" the interviewer asked. It was a drizzly morning last February, and we were sitting in a small room with glass walls, in the corporate office of a large online retailer. I paused, thrown off by the question I'd been expecting but still hoping to avoid, and stared at the French bulldog on her sweater.
"I wanted to spend more time with my kids," I said, using the excuse I had rehearsed with my friends. "I've been freelancing ever since. Now that my kids are all in school, it's the right time to go back to work."
My interviewer smiled. The lie made sense to her. More than that, it built a sense of connection between us. But it snaked its way down my throat and into my chest, squeezing me until I felt breathless.
She moved on to the next question, but I watched as she googled my name to pull up some of my recent work. If she kept scrolling, she would see the truth. She would know that I left work when my health collapsed from mitochondrial disease five years ago, and that even I had no idea whether I could handle the physical demands of going back to work. But as I watched her click on the first result, my lie slowly eased its way out of my chest and into my stomach.
My mother tells me that, as an infant, I reached for things with my fingerless right hand and screamed when I couldn't grasp them, the way any baby would. But those are her memories, not mine. From the time I was capable of understanding my differences, they've been burned into my consciousness. Being different quickly became as much a part of me as my missing fingers.
It didn’t take long to discover that I could do anything anyone else could. I learned to walk with casts on my arm and leg, and they didn't slow me down. But I also learned that doing was never the problem; no matter how much I could do, I was still different. I did my best to blend in, but my hand and my droopy eyelid always gave me away.
The doctors told my parents that my missing fingers were a fluke; a random accident of genetics and fate, disconnected from any known syndromes or disorders. But that wasn't my only health problem. My childhood was pocked with barium enemas, upper-GI tests, colon cleanouts, and kidney function tests. My kidneys were scarred, and no one knew why; I was only 8 years old when the technicians told me to pee on a table so they could watch the urine progress through my system, lit up in technicolor by the contrast dye they'd given me. Whether from physical inability or humiliation, I just couldn't do it.
My medical problems were strange and disconnected, scattered like confetti through every organ and system in my body. It was easy to dismiss me when the tests turned up nothing. Each symptom was treated as a new and separate health condition, and eventually I came to believe I was simply unlucky. As I got older, I didn't question why I sometimes had to be homeschooled for entire semesters, or why I couldn't do PE at school. When my parents told me not to be lazy, I vowed to try harder.
The feeling I called "laziness" was actually bone-crushing exhaustion.
I was so focused on trying harder that I was into my thirties — with three marriages, seven kids (including three pairs of twins), and two different careers already behind me — before I realized that the feeling I called "laziness" was actually bone-crushing exhaustion. I'd spent my whole life thinking that's what everyone else felt. It was only when my "laziness" progressed to drooping eyelids and numb, tingling limbs that I began to suspect something was really wrong. Wrong enough that something had to give.
The first thing I gave up was law school. I was taking classes in the evenings after work as a technical editor for a software company, and I loved it, but law school made for long days and didn't pay the bills. I applied for a medical leave of absence, but I was sure I would go back and finish my degree. In the meantime, I consoled myself with my job.
Not long after I left law school, I found out my gallbladder was full of gallstones — and ended up spending five days in the hospital, my body completely derailed by what was supposed to be a routine surgery. When the doctors sent me home, my chest still felt like it was being crushed from the outside, and it took all the energy I had to keep my eyelids open. I left work on disability leave, but I told myself again I would be back, and better, soon. I just needed the doctors to figure out what was wrong with me, so they could fix it. That was four years ago.
Disability leave was a blur of infusions, blown veins, doctor's appointments, and days in bed. My doctors spent months cycling through diagnosis after diagnosis and treatment after treatment, but none of them worked. Most of them made me worse. I went in and out of the hospital, sometimes on oxygen, and law school and work began to feel like remnants of another life. My prime had passed me by before it even really got going.
After six exhausting months of this, I got a Facebook message from a friend of a friend as I was sitting down to dinner with my kids. "I read your blog today about your health problems," she wrote. "I noticed that one of your eyelids is drooping. My son has mitochondrial disease. Your eyelid and your story remind me of him."
I rolled my eyes when I read it. Just what I needed — another armchair doctor trying to diagnose me. I'd had my fill of friends who told me all I needed to do was go on a juice cleanse, or switch to a vegan diet. But, holding my breath a little, I googled mitochondrial disease on my phone, just in case she was onto something. The results made me gasp.
In the context of this disease, my collection of symptoms wasn't bizarre — it was textbook.
In the context of this disease, a condition that attacks the body’s basic cellular means of producing energy, my collection of symptoms wasn't bizarre — it was textbook. At first, I was overcome by a surge of relief; after so many years of not belonging, maybe I had finally found my place. But as I kept reading, I began to panic. Much of what I read talked about the complicated genetic inheritance of the disease, and how many children died from it. I stared at my children, gathered around the dinner table, arguing over the last bit of mashed potatoes, and my gut wrenched. If I had a genetic disease, what did that mean for them? Would they end up like me?
I made a doctor's appointment as soon as I could. When I told my neurologist what I'd read, he looked surprised. But then his face reflected the same dawning realization as my own. "It could be," he told me. There is no blood test that can diagnose mitochondrial disease, so we needed to take a muscle biopsy from my upper arm. The truth was in my cellular pudding.
I couldn't wait for the biopsy results, which would take three excruciating months to arrive. I was desperate to find something, anything, that would explain my health problems. But what I didn't understand then was that once they confirmed the diagnosis, any hope of getting better would be gone. Mitochondrial disease isn't always a death sentence, but it has no treatment or cure.
When my neurologist called me three months later, my heart pounded in my chest as I waited for him to speak.
"The results are consistent with mitochondrial disease," he said.
I waited for that feeling of validation I'd expected to wash over me, but it didn't come. As the weeks passed, and fall turned into winter, my doctors stopped talking about treatments and began talking to me about quality of life. I was 33 years old, and my future was collapsing in on itself.
By the time I entered the courtroom for my first Social Security disability hearing three years ago, I had already applied and been denied twice by mail. This time, I had to plead my case to a judge.
I didn't expect to win. I'd heard horror stories about how difficult it is to be approved, especially as a young person. No matter how old my health made me feel, I was still only in my early thirties. But I couldn't work, and I was running out of options fast.
I had hired a lawyer after my second denial, and he told me it was the state medical examiner's job to discredit me at the hearing. He coached me before the hearing, reminding me not to minimize my symptoms. "I know you tend to make light of your health problems," he told me. "But you can't do that here. Don't lie, don't exaggerate, but you have to be honest about how hard things are for you." I nodded my head, but my smile froze. I had no idea how to talk candidly about my health problems. I'd been hiding them my entire life.
I had no idea how to talk candidly about my health problems. I'd been hiding them my entire life.
The courtroom looked more like a conference room, and there was barely enough space for me and my lawyer to sit before the judge. The medical examiner called in to the hearing from another city, in between seeing his own patients, so the judge skipped straight to his testimony. He presented my medical history, slowly and painstakingly, and I felt my face flush as a stranger told the courtroom the intimate details of my disease. Finally, he offered his opinion to the judge as an expert witness.
"She has mitochondrial disease," he told the judge. "It's progressive and there's no treatment or cure. She is disabled, and her health will never improve."
The judge approved me on the spot. It took more time for them to decide how to code my rare disease in their computer system — "It's a form of muscular dystrophy, right?" "What about myasthenia gravis? Doctors thought she had that at first, it's close enough" "What about some other kind of neurological disorder? That could work." — than we spent on the hearing itself.
I didn't care how they coded my disease; I was still frozen by the medical examiner's testimony. I knew I should have been relieved. I knew I was lucky to be approved. But no one had ever presented my disease to me with such finality before. Disabled. Progressive. No treatment or cure.
I left that room officially disabled. I cried the entire way home, angry at myself for my ingratitude, but unable to stop.
After my diagnosis, I raged against my body, hating it, cursing it, and clinging to the memories of what I once had. I wanted to dance all night, sweaty and breathless, to climb a flight of stairs easily, to walk through the mall with my daughters without having to rest. I wanted the body I once had, or maybe never had, and I would accept no substitutes.
We live in a world of medical breakthroughs, I told myself, of stem cell treatments and next-generation genetic testing. There had to be some hope for the future. I tried acupuncture, chiropractors, massage, reiki, meditation, yoga, mindful breathing. I tried all of the diets and essential oils I had once made fun of. I was determined to find the treatment the doctors couldn't. But no matter how hard I tried, my body refused to change.
My therapist told me I needed to learn to accept my health problems. She was decades older than me, but she took the three flights of stairs to her office without pausing while I waited for the elevator. I wanted to scream at her and ask her why she thought she was qualified to talk to me about disability.
I stopped making plans for the future, because I didn't believe I had a future worth living for.
Years passed without any real change, and certainly not for the better. My doctors shrugged and told me to come back and see them in a year. I resolved myself to a slow march toward death. I stopped making plans for the future, because I didn't believe I had a future worth living for. Then, through a Facebook support group for people with mitochondrial disease, I met Rachel.
Although Rachel and I had the same disease, she was far more impacted by it. She relied on a ventilator to breathe and a wheelchair to get around — but she mothered her children with just as much passion and love as I did. She and I swapped recipes, laughed over our kids’ antics, and shared a penchant for medical research. As I got to know Rachel, I began to wonder what would be so bad about turning out like her. Rachel is honest about her physical struggles, but she's equally open about the joy she experiences. For the first time, I considered the idea that my disease could progress without stealing my own happiness.
I'm by no means romanticizing my disease. There's nothing beautiful about pain and suffering, and I am not grateful to have experienced so much of it. But there's no denying that with all that pain comes the ability to love and empathize in a way that seems impossible to people who've never experienced its depths. That love and empathy are gifts that I can't imagine returning now.
As a child, my goal was to be just like everyone else, and I bristled at the knowledge that no matter how hard I tried, I would always be different. It took becoming officially disabled as an adult to make me wonder how much of myself had been lost to this quest for sameness. If I hadn’t always been trying to fit in, who could I have been?
This past December, I was sitting in a warm, crowded coffee shop working on three assignments due that week, and using the computer was making my head throb. I kept typing, ignoring the throbbing, until it forced me to take a break. I sipped my coffee, closed my eyes, and counted to 20. I opened my eyes and pushed my eyebrows down with my fingers, forcing them to stop compensating for my drooping lids — just one of the many little adaptations to my illness that I’ve learned over the years. The pounding in my head eased, just for a moment, but it was enough for the thought to rise into my consciousness: I was working. I could work.
I didn't start writing to build a career. I wrote in bits and pieces, on my phone when my migraines left me unable to use a computer. When that failed, I learned to use talk-to-text to transcribe my feelings into words. I wrote, and wrote, and wrote, like a compulsion, and the first time a publication asked me to invoice them for payment, I was shocked. It had never occurred to me that I could make money with my essays. They were pieces of me that I shared with the world, not something I did for money. But I needed money, and slowly I began to write more.
When I first got my muscle biopsy results, I thought I was disabled by my broken, battered cells. It never occurred to me that I really became disabled when I let "total and permanent disability" define me, or maybe even long before that, when I decided the only way I could be valuable was to be just like everyone else. In that coffee shop, working without realizing I was working, I realized just how much I had disabled myself.
I don't think about health in terms of treatments and cures anymore. I ask my doctors what can be done about my pain and my quality of life. I give them problems they can solve, and I don't expect miracles. But mostly, I've just given up on being healthy.
I don't think about health in terms of treatments and cures anymore.
For years, I thought I could only be happy or successful if I felt better. The only success I could imagine was one that looked like the ideal of good health. Letting go of those ideas gave me a surprising amount of freedom. I don't have to feel good to do good; I don't have to be healthy to maximize my health. My world doesn't have to be so small.
I still get breathless and sweaty after I eat, while my body struggles to produce enough energy to digest my food. Standing makes my heart race and my blood pressure plummet. My brain doesn't work as fast as it once did, and I sometimes forge or mix up words. But after years of focusing on what I can't do, I finally see what I can do, and how I can do it.
My career doesn't have to end because I need rest breaks, or accommodations to use a computer, or triple doses of my medication and massive quantities of electrolytes every day. I don't need a cure; I need supports. And in order to advocate for my needs, I need the courage to believe that who I am — challenges, imperfections, and all — is worthwhile enough to exist. I'll need that courage even more if the political changes of the next four years threaten my health care coverage the way I worry they might, and I would be lying if I said part of my determination to return to work wasn't motivated by that fear.
Two years ago, I was told the life I had was gone, and that I was totally and permanently disabled. I don't know what my future holds anymore, but it isn't small and bleak. And when interviewers ask me about that five-year gap in my résumé, I tell them the truth. I am disabled, and I am good at what I do.