‘I am a COVID-19 Long Hauler with these symptoms COVID Long Haul’

Where do you go when you feel scared, confused and lonely after a life-altering diagnosis? For many people, the answer is … online. In WH’s 2021 Owning It series, you’ll find nine companies that have started using social media and digital tools to search for solutions and communities they wouldn’t find elsewhere. Barriers, broke.

It all started on Friday, March 13, with a very low fever. Then I started to develop coughing and congestion in the chest and, in a few days, I started to feel an intense shortness of breath. I was 26 and had no serious health problems, so I assumed I would be fine. But then the shortness of breath became strong enough that it was very difficult to breathe, unless I was lying on my back, concentrating on my breath, and could no longer walk or speak. Monday night, I went to the hospital, where I received supplemental oxygen and positive test for COVID-19.

I left the hospital on Wednesday. Although I still felt very weak, my fever passed and my breathing was much better, so I assumed the illness would last a week or two at most, that in the end I would get better quickly. But the gastrointestinal problems I experienced for the first time on my last day in the hospital continued for two or three weeks.

I also started to have flu-like symptoms: stuffy nose, post-nasal drip and sore throat. I don’t really have headaches in general, but in late March or early April, as I was trying to become a little more active and work on my computer, I had very severe headaches in the afternoon accompanied by eye pain. and sensitivity to light. Every day around 3 or 4 pm, I felt like I had been hit by a truck.

All of these symptoms increased and disappeared by the beginning of June. Now I feel 100% better, but when I’m menstruating, some of the symptoms of cold, flu and headaches come back.

I consider myself a long-standing COVID survivor. But in the first few weeks that I was sick, we didn’t have any of the language we have now, like COVID long haulers, or as much information as we have now about symptoms and infection. From time to time, I would text my primary care doctor via telehealth, telling her about a symptom and asking if it could be related to COVID. She is wonderful, but her response was almost always: It can be. Could not be. We don’t really know.

On March 26, Body Politic (the queer feminist wellness collective, of which I am founder and editor-in-chief) I started an Instagram chat for anyone who thought they had COVID. The group grew up before our eyes and we soon knew that we needed a different tool. We switched to Slack and now we have over 9,000 active members and more than 60 channels, including for different types of symptoms (gastrointestinal, respiratory) and people who have had the symptoms for a number of days (more than six months). We use a Google Form to examine potential members and limit them to people who claim to have symptoms of COVID-19 or, in some cases, care for people with symptoms.

Although the group is open to all COVID patients and survivors, most active members are long haulers because they really need this resource. It is very useful when you are a patient experiencing a disease from which you are not necessarily improving, having other people who understand this experience very intimately, because it can be very socially isolating. You are physically isolated because you think it can be contagious, but you are also losing contact with friends because you are not participating in Zoom’s happy hour or a socially distant walk. I developed friendships with strangers I met in the support group who are, at the moment, deeper than those I have had in the past five years.

I don’t want the group to exist for very long because I don’t want the pandemic to continue. But I also see from patient advocacy movements that, even after this pandemic is over, people are likely to still be dealing with the long-term physical, mental and financial impacts of having had COVID. I imagine that this fight can be long.

This article appears in the March 2021 issue of Women’s Health. Become a WH Stronger member for a print subscription and more great benefits now.