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Opinion | 3 lessons for people struggling with prolonged recovery from illness

You’re reading The Checkup With Dr. Wen, a newsletter on how to navigate covid-19 and other public health challenges. Click here to get the full newsletter in your inbox, including answers to reader questions and a summary of new scientific research.

This week, I wrote about the need to focus resources on treating and preventing long covid. I can relate to the frustration and desperation of people suffering from long-term conditions, as I’ve been managing my own months-long recovery from pneumonia.

In July, I wrote about the unsettling experience of being on the other side of the stethoscope when I suddenly fell very ill and was hospitalized. Many readers have kindly written to ask whether I’ve fully recovered.

I wish I could say yes — that as soon as the antibiotics kicked in, I was back to everything I was doing before. The truth is far from that.

The first week was rough, as expected. I was so tired, I could barely get out of bed. I gasped for breath after walking 10 steps to the bathroom. Thankfully, the fatigue lessened, and I was able to resume work.

But my trouble breathing persisted. I also developed a hacking cough. I couldn’t talk for more than a few sentences without coughing, and it was nearly impossible to get through an hour of lecturing to students.

My primary-care physician referred me to a pulmonologist, who thought that the pneumonia triggered asthma, which I had as a child. He attributed the persistent cough to an asthma manifestation: Whereas some asthmatics wheeze with exacerbations, others cough.

I was started on steroids and inhalers, which helped for a few weeks. My walking progressed to a slow jog around the block. I got back into the pool and rejoined my masters swim team for a few workouts.

But just when I thought I was better, the symptoms worsened. The cough was constant. The fatigue returned. My blood-oxygen levels, which were almost back to normal, at 94 or 95 percent, began dropping to the 80s again.

I improved again after another round of treatments, but I remain worried that the relief is temporary. I fear there is something else the tests have missed. Most of all, I’m distressed I won’t get back to where I was before I became sick.

As I process everything that has happened, I want to share three ideas for people in similar situations:

1. Push for an answer, but know there might not be one. Earlier in my career, I ran a center for research on patient-centered care and met many people who went years without an explanation for their debilitating symptoms. Since covid-19 hit, I’ve spoken with many long-covid patients. Like people suffering from chronic fatigue syndrome, chronic Lyme disease and other hard-to-diagnose ailments, covid “long-haulers” are understandably frustrated by the health-care system.

I don’t have an answer for these patients — or for myself. Much of medicine exists in a gray area. Often, things are clear only in retrospect. A course of treatment can be a form of diagnosis. What works for one person might not work for another. Being an advocate for your care means bringing up concerns to your providers, but they, too, are limited in what they can do.

That doesn’t mean patients should give up. Keep a journal of how you feel in response to various treatments. Learn from online communities and proactively bring up options with your providers. You are the expert when it comes to your body; speak up when something isn’t right and continue pushing to try methods that could help.

2. Redefine your goals. For years, I’ve defined myself by my fitness goals. Some of my closest friends are people I’ve met through sports, and I’ve recently found a terrific community through swimming and getting into triathlons. Before my pneumonia, I was looking forward to participating in my first two open-water races and setting personal records in running events.

This is not going happen, though I’m still planning to participate Sunday in a cancer research charity swim, which I had committed to doing in honor of my mother. Given how poorly I felt until a couple of weeks ago, just finishing the swim would be a success.

Goals need to be calibrated to your circumstances. If you’re facing setbacks from illness or other life events, it’s okay — indeed necessary — to set new objectives and take things day by day.

3. Find joy and gratitude where you can. I’ve had plenty of moments of self-pity and bemoaned that this happened to me. Then I remind myself that accidents and illnesses can occur to anyone.

I’ve been fortunate to access excellent medical care, but millions of American cannot. A driving force throughout my life has been fighting for universal, high-quality care, which I feel even more strongly about now.

This experience has also made me so grateful to my children. My son, who just turned 6, has become a charming and kind person and is excelling in his new school. My daughter, the 3-year-old terror, is playful and full of energy. I feel so lucky to be their mom and to revel daily in their wonderment and joy.

There’s a long list of people to whom I feel incredible gratitude, from my doctors to my husband and my friends. And I thank all of you, too, who have written with your well wishes and your own stories. Illness is a human condition that everyone shares. Thankfully, recovery can be, too.

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