What Seeking Independence Looks Like on My Chronic Illness Journey
In the United States, we’re gearing up to celebrate Independence Day. Fireworks often steal the spotlight, but I’ve been reflecting on some of the underlying values that also get more attention as July 4th approaches. Over the past year, I’ve often felt backed into a corner by my collection of chronic, incurable illnesses. What does freedom look like when I feel trapped in a broken body? In the face of pressure to never give up, how do I discern which treatments I want to pursue for my own sake? And what if continuing to fight for better health is actually hurting me?
My attitude toward my body escalated from complicated to contentious in 2017, when I had to stop working due to chronic pain and fatigue. I felt betrayed by my 33-year-old body, and ashamed of the two master’s degrees I was too sick to use. About six months later, I learned the reason for my symptoms (multiple sclerosis, or MS) and that there was no cure. My depression, which I’d lived with since college, became all-consuming. Since pregnant people can’t take the medication that prevents my MS from causing new damage, I added biological motherhood to the list of losses to grieve. My thoughts of suicide intensified to the point I was worried about hurting myself, and I had myself admitted to the hospital for the first time.
Voluntary commitment is a perfect example of how complicated the concept of freedom can get in the context of health. I’ve gone to an intensive psychiatric treatment center four times, knowing my rights would be severely curtailed. And every time, I wanted to be discharged before the doctors thought I was ready. I’ve never left against medical advice, partly because I’m a people pleaser, but mostly because it might jeopardize insurance coverage. I’d lie on my hard mattress, listening to the wails of other patients, wondering why I’d agreed to come. Again. In my heart, I knew why. It was because I didn’t want to do anything that would cause my family pain. I’d close my eyes, wrap my plastic-coated pillow around my ears to muffle the sounds of suffering, and wish I’d never been born.
I enjoyed relief from my depression for about six months in 2020, after an extensive course of electroconvulsive therapy (ECT). Then my mood crashed, and I’ve been trying to find my way back ever since. This spring, I decided to try a vagus nerve stimulator (VNS). VNS is an FDA-approved treatment for severe, treatment-resistant depression, but it was hard to accept another implanted device after difficult experiences with port and PICC lines. And unlike those temporary central lines, part of the VNS is permanent because it’s too tangled with delicate anatomy to remove. I’m still haunted by the mental image of a tangle of wires resting among the ashes of my cremated body.
While considering VNS, I had to confront the hard reality that nothing else was working. In the past year, I’d tried a second round of ECT, transcranial magnetic stimulation, intranasal ketamine, and a new medication. The list of remaining treatment options kept getting shorter and less appealing. VNS seemed like the least bad option, but I’ll never forget how it felt when I learned I’d been accepted to the VNS study. My body crumpled into a seated version of the fetal position, one hand covering my tear-soaked face and the other over my heart. I wondered if qualifying meant I had to actually go through with it, and realized that part of me had hoped for a rejection. I knew it was my choice, but felt like I would be letting people down if I got off the VNS train. Besides, what was the alternative? My sadness was excruciating, and I felt increasingly isolated and resentful of the people whose love was keeping me alive. The next morning, I called the surgeon’s office to schedule an appointment. Looking back, I don’t regret my decision, but I do worry that desperation may have overshadowed free will.
It’s too soon to tell whether VNS will provide even temporary relief from my depression. If not, my psychiatrist has assured me she has a few ideas for what to try next. But what if I don’t want to keep trying to conquer my depression, or any of the other chronic health conditions in my life? I’ve spent years on the attack, and have little to show for it beyond scars and painful memories. I’m trying to befriend my VNS device, which I named Thor. Maybe I can do the same with my MS lesions, confused ovaries, cranky intestines… the whole gang. Instead of trying to fix my body, maybe I can reroute that energy toward learning how to live with its limitations. People have told me I’m brave for undergoing so many treatments, but I think it takes more courage to stop fighting. To break with social conventions and ask well-intentioned people to stop sending unwanted pep talks and articles about the latest research. To focus on what is, with all of its challenges, instead of what could be.
That sounds like independence to me.