I’m Chronically Ill. The Lockdown Makes Me Feel Accepted.
My normal life is defined by limitations. Now that’s the case for everyone else.
A few days after Governor Ralph Northam’s stay-at-home order took effect in Virginia, my husband Dan stopped shaving. He usually wore a suit to work, was clean-shaven, and organized. But a week later, I watched him down bowls of cereal, snack on Wheat Thins, and spend close to 12 hours at his computer in pajamas. Every day, I watched him wither, until one evening he sat down on the couch and told me: “This is hard, very hard.”
“I know,” I said. Because I did. For the first time, he was forced to live the way I did.
Unlike Dan, I’ve been in isolation since 2016. I’ve quit two jobs — one full time, one part time — because it felt impossible to keep up with what regular work demanded: my availability 24/7, travel, and most importantly, an able body. I’m 33 years old and have a long history of autoimmune disorders. A recent diagnosis of neurally-mediated hypotension, a rare subtype of POTS syndrome, and psychogenic nonepileptic seizures left me functionally disabled because I began to have fainting spells one to three times a day. I cannot go anywhere without supervision. Unsurprisingly, this reduced my connection with friends and family to WhatsApp and FaceTime.
When the stay-at-home order was signed, the first things Dan prioritized were food and cleaning supplies. We have a one-year-old daughter, and as the single wage-earner in our family, he genuinely did what he thought was best for us. I, on the other hand, worried about what isolation might mean for us — especially for him. As a chronically ill person, I knew that able-bodied people were seldom forced to reconcile with limitations. Everything worked in their favor: trains, cars, workplaces, doorways, even cute neighborhood restaurants with stairway-only access.
In my world, normalcy has always been defined by limitations. I spend hours at specialist clinics scattered in the D.C.–Virginia area, taking care of housework or our baby. Most days, I go without speaking to anyone. I’ve fought severe depression and have grown accustomed to fighting off feelings of guilt and failure.
Being chronically ill and disabled means few friends, limited work options, and worst of all — constantly being looked upon with pity.
No doubt, I’m privileged to have a home and share it with my family. It’s to live in it that has always been a struggle. Dreams don’t drift past these walls the way they can for the able-bodied.
And yet, with the stay-at-home order, suddenly small aspects of life weren’t quite so complicated anymore. My doctor’s offices offered me remote clinical-health visits, something they never did before. Usually, if I showed up to an appointment late, or canceled within a 24–hour period, I paid fines ranging from $45–$80. As a mother and bus user living with limited mobility because of cervical dystonia and arthritis, I couldn’t hold my daughter and fold a stroller in a crowded bus. Suddenly, there was an alternative to wrestling my way, unsupported, through that.
I find that the general public’s attitude toward those with invisible disabilities and the chronically ill is circumspect, sometimes lacking in empathy. Yes, Virginia, like other states, has made some efforts toward improving aspects of life for people with disabilities, especially veterans and those living in rural areas. Still, I see so little of this translate to reality. My whole life before the pandemic depended on ride-share services, public transport, or working around my husband’s schedule to make it to medical appointments.
No doubt, I’m privileged to have a home and share it with my family. It’s to live in it that has always been a struggle. Dreams don’t drift past these walls the way they can for the able-bodied. There is no exit, no glimmer of sunshine behind that rain cloud. About 61 million Americans today live with a disability, one in four are women. Yet no provider, so far, ever mentioned remote health care as an option to me until news broke of the coronavirus.
In a sense, I’m excited for the post-pandemic world. When I read that Congress signed the Coronavirus Aid, Relief, and Economic Security (CARES) Act, a bipartisan effort to expand virtual care and lift barriers to health care, with the new Covid-19 Telehealth Program to make access easier, I felt a bittersweet rush of relief.
Strangely, it has made me feel more accepted — like less of an afterthought. I’ve suddenly been able to make all my appointments for physical and occupational therapy, mental health, and routine follow-ups via phone or videoconferencing. Friends are able to relate to the feeling of isolation and are talking openly about grief. My Facebook and Instagram feeds are filled with virtual happy hours, book readings, and free courses. Parents are openly talking about coping with gender inequity at home.
On one hand, the pandemic is a shocking reminder of the universality of the human condition. I have an immunocompromised body, but the virus has claimed the lives of hundreds of thousands of physically healthy people. On the other, this tragedy has opened up our society to months of introspection about our lives and the way we’ve been living.
In my home, the lockdown has offered Dan a rare glimpse of my world. Going through the emotions that come with social isolation has led to outcomes I never predicted. After weeks of working long hours, binge-watching Narcos or Westworld, and leaving a growing pile of laundry near his bedside, he now speaks frequently to his therapist about what he could do better. He makes the time for us to have lunch together. He loads the dishwasher more often. It isn’t as if he wasn’t thoughtful enough to do this before, it’s that he understands what it might have felt like for me — and for others like me — who felt we didn’t belong.
So maybe, there is some hope after all.
This weekend, we took the short trail through our neighborhood and watched robins together. I ordered a medical bracelet off Amazon in the hope that I will slowly be able to discover the world on my own. We sat with our daughter in the backyard and let her feel the sun. The three of us are different, but for the first time, I feel stronger knowing that we will overcome this moment together.