I Came Back to Nursing to Fight COVID - Now Long COVID Has Left Me Homebound

I spent nearly 30 years as a nurse, including in an infectious disease clinic, before I stepped away, worn down by the relentless work. But when COVID swept the nation, I came back to help my fellow Seattleites, and I had rarely been prouder. Then, in July 2023, the virus I returned to fight caught me too.

I was a runner and a hiker, healthy my whole adult life. I did everything I knew to do, and it disabled me anyway.

I have Long COVID that developed into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a serious, multisystem neuroimmune, neuroinflammatory disease — most commonly triggered by a viral infection — with no FDA-approved treatment and no validated diagnostic test.

For the first time, Congress can do something about it. A single $50 million line in this year’s federal spending bill would fund a ready-to-implement national research plan. An estimated 85,000 people with ME/CFS across Washington are counting on it.

After the infection, my symptoms persisted. I suffered from exhaustion, brain fog so thick I couldn’t do the job I loved. I couldn’t regulate my own temperature. I gained 40 pounds while barely eating. My heart raced for hours.

I wondered if it was menopause, or even cancer. But every lab test came back normal.

The cruelty of this disease is that it is devastating and it is often invisible.

Three decades in medicine taught me how to read charts, chase down specialists, and advocate for patients. Even so, it took months of my own research to grasp what was happening to me.

I keep picturing patients without 30 years of clinical training to fall back on — no medical vocabulary, no one in their corner.

The financial toll of this disease has been its own ordeal. I spent more than $12,000 out of pocket on care last year. I have been denied Social Security disability twice. My private disability insurer stopped payments after I submitted every required form.

None of this is unique to me. Across the country, the average person with ME/CFS watches their income drop 57% and pays roughly $4,439 a year out of pocket for care that rarely yields answers. More than 60% depend on family members who quietly absorb the loss.

My husband puts in long hours and then comes home to the cooking and cleaning I can no longer manage. We count ourselves lucky — we have a house, insurance, and enough to stay afloat. Many families don’t.

At its worst, this disease confines a quarter of patients to a bed or a single room. Many of us go uncounted for the simplest reason: we are too sick to leave the house and be seen.

In every county in Washington, people are living the way I do — shut in, doubted, and waiting for someone to act.

The National Institutes of Health (NIH) ME/CFS Research Roadmap names concrete work — identifying biological markers, building diagnostic tests, and running trials on promising treatments.

Last year, Congress endorsed that blueprint. The one thing missing is funding to begin — $50 million that appropriators could write into this year’s bill. No one but Congress can put it there. Until they do, the rest of us stay exactly where we are.

I spent my career looking after other people — drawing blood, giving shots, sitting with patients through the worst days of their lives. I would give almost anything to be back at that work.

Long COVID is real. ME/CFS is real. It came for me, and it can come for anyone.

What’s left is a single line in a spending bill and lawmakers willing to write it.

The people counting on that line are not a statistic. We are nurses and teachers and neighbors. Some of us are the ones who once sacrificed everything to protect you. We have waited long enough.

Jana Gezon is a registered nurse of 30 years and a Long COVID and ME/CFS patient advocate living in Seattle, Washington.