MG means that, like Sisyphus, I’m constantly rolling a stone up a hill

In Greek mythology, Sisyphus, king of Corinth, offends the gods and is sentenced to spend eternity rolling a stone up a mountain, only to have it roll back down just as it reaches the top. The punishment doled out to Sisyphus is horrifying. How awful it is to spend your energy on a task and then discover that you need to start over again.

Since my myasthenia gravis (MG) diagnosis in 2020, I’ve developed a weird kinship with the ever-laboring king.

The months immediately after my diagnosis were difficult. The COVID-19 pandemic was in full swing, and being immunocompromised put me in the high-risk category. We were in uncharted territory, and my neurologist could only provide advice based on recommendations from the U.S. Centers for Disease Control and Prevention and the National Institutes of Health. For months, I was advised to have as little contact as possible with those outside my immediate family.

During that time, in an attempt to control my MG symptoms, I tried several medications. Some of the side effects I experienced were weight gain, insomnia, mood swings, and fatigue. When one drug didn’t work out, my spirits would sink. Then my hopes would center on the next medicine. I’d think, “This is the one that will do the trick.” Inevitably, it wouldn’t, and I’d be back to square one.

Sisyphus rolled his stone uphill. I didn’t roll a stone, but each time a medication failed to accomplish its intended purpose, it was like a stone rolling back downhill. I’d be left with the negative side effects of the drug and dashed hopes.

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I was emotionally and physically worn down. One night, while talking with a close friend, I admitted that I couldn’t go on. Nothing promised to ease my symptoms. It appeared to be time for me to accept it and let the disease run its course. Sisyphus could roll a stone uphill for eternity, but he was a mythological figure. I’m human with limitations.

Like most people, I’ve faced other challenges over the course of my life. I underwent two surgeries for a brain tumor, sat with parents as their lives ended, worked through relationship challenges, and overcame professional obstacles. MG wasn’t the first stone I had to roll uphill.

I didn’t give up. Instead, I went through a two-month approval process that resulted in treatment with Vyvgart (efgartigimod alfa-fcab). The manufacturer’s support team was fantastic, and many patients have had success with the drug. Unfortunately, it didn’t work for me. I was devastated.

My neurologist suggested I try Ultomiris (ravulizumab-cwvz). With skepticism, I began the approval process with my insurer. To my surprise, it took less than a week. I soon began Ultomiris infusions, and the miracle I’d been waiting for arrived. Ultomiris gave me back my life. I am forever grateful for this, as are my family and friends.

The struggles continue

Fast forward to Sept. 3 of this year. I had an infusion scheduled for the next day, but when the specialty pharmacy called my insurer to verify coverage, they were told that, as of Sept. 1, I was no longer insured. Since my disability leave and employment ended, I’ve sent monthly COBRA payments to a third party, which sent them to my insurer. As of Sept. 1, this third party no longer had a contract with my former employer and was unable to collect my payments. I was uninsured.

I did not receive any communication regarding these changes. I’d thought my Sisyphean struggles were over, but I was wrong.

I’ve now been working for 15 days to resolve these problems. Every day, and this is no exaggeration, I’ve spent hours talking with representatives from my former employer, the company that collected my COBRA payments, the company now contracted to collect them, my former health insurer, and the health insurer now contracted to cover me — all to no avail.

I still lack health insurance. I have nowhere to send my COBRA payments. I remain stuck in a loop where nobody seems able to help. I am running out of the energy necessary to roll stones up hills.

MG has given me a kinship with Sisyphus that is stronger than I suspected.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.