Being a Covid Long Hauler

The idea of the “Covid long haul” patient started to emerge in the summer. Patients from New York who had been infected in the spring started speaking out about their symptoms dragging on for weeks and months. The 10-14 day window for many was stretching out well beyond what anyone could predict. The severity of the illness seems to have no impact. Patients who suffered a minor fever and a headache are now struggling with heart problems. Just like the severity of the illness itself, there seems to be no rhyme or reason as to why some people suffer the “tail of the virus” when others do not.

I was officially diagnosed as a long hauler around week 7 of being ill. My symptoms were still very intense at that point. Headaches, loss of taste and smell, memory loss, and severe fatigue plagued me day after day. It was wearing on me both emotionally and physically. I felt terribly for my husband and my kids, but nothing was working. I would make a work call and have to lay down for an hour. I would fall asleep at 6pm at night. I couldn’t find words to express what I was thinking. Executive functioning skills typically come easily to me, and I found myself complete befuddled by every day tasks.

I am now almost 17 weeks from initial symptom onset. My taste and smell are still muted but have slowly returned. My cognitive functioning has improved dramatically. I used to write these blog posts and then nap. Now I can write them and continue about my day. Finding words still catches me occasionally, but not as often. The new migraine medicine has been a life saver. I still have breakthrough headaches but nothing like I was seeing before. Having contact with the neurologist has been incredibly helpful in my recovery.

I know my story, in many ways, is so much easier than my fellow patients. I know people that have been physically devastated by this illness. People who have been unable to return to work. Men and women who are seeing multiple doctors because they want to function again normally. They are desperate for help and answers where there are none. In a novel virus, we keep trying new things hoping something will stick.

There are millions of us. Mount Sinai Hospital in New York City has set up a recovery center for people still struggling with multi-system issues as a result of their infection. Some people learn to walk. Others work on memory activities usually reserved for Alzheimer’s patients. Chicago has started something similar, and in speaking with fellow patients in seems many hospitals on the West Coast are starting to do the same.

Every day I consider myself lucky. I didn’t die from Covid. I only had to go to the hospital once and I didn’t have to stay. After some trial and error, I found a neurologist who was able to look at my brain and start to find a way to help. I do not struggle with heart and lung issues. Thanks to an amazing company, I am able to continue working and provide for my family. I have health insurance and can afford to search until I find the right specialist. Although I have many challenges, I have hope.

We are doing a much better job fighting the virus for the most ill patients. I am so excited to hear about the new drug therapies that continue to be used successfully for our most vulnerable patients. However, the death tolls still rise…perhaps a post for a different day. Vaccine development has been amazing, and also gives the world something positive to believe in.

But what about when the virus has slowed and people start to return to life? What about the millions of people that can’t return to work or school? What will we do about the people who are struggling? Patient friends of mine are still seeing significant symptoms at six months. Some symptoms are manageable – not having my taste or smell is annoying but doesn’t hinder my life much. However, a patient who is regularly passing out due to battles with tachycardia is going to have a very hard time returning to work. And since insurance is tied to being employed….

These people are scared and feel alone. We are finding each other. When will our country find us?

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