A COVID community has become important for Carrie Steinweg
COVID Catch-up is a weekly column featuring Lansing Journal journalist Carrie Steinweg’s personal experience with COVID-19 and things she learned from others who shared their experiences. Subscribe today to make sure you don’t miss any COVID Catch-ups. Last week’s column is available here.
By Carrie Steinweg
LANSING, Ill. (June 17, 2021) – Although there have been millions of cases of COVID around the world, it’s not something that has the same effects on everyone who contracts. Some people have mild symptoms, and others have severe symptoms. Not everyone experiences the same symptoms. Some don’t know they have it until they test positive. They may never show any symptoms at all. It’s unlike any virus, illness, or disease we’ve seen before in our lifetime.
Everyone’s experience with COVID is a little different. And because no one else’s case is the same as yours, it definitely can leave you feeling isolated and like no one understands. Going through the experience of having COVID has left me more empathetic to people who have diseases or disorders that aren’t outwardly visible.
When it’s something that’s not obvious on the outside, few people realize what you’re dealing with. There are a lot of conditions that fall into that category, from autoimmune diseases, to diabetes, to heart disease, to cancer. There are many chronic conditions known as “invisible illnesses.” We likely encounter people on a daily basis who are suffering from such conditions — ones like fibromyalgia or multiple sclerosis — and may be feeling much different than they appear.
COVID has such a wide range of effects. It can land anywhere from causing no symptoms at all to it resulting in death. I had a lot of symptoms and was even briefly hospitalized, so I’m somewhere in the middle.
Although COVID has affected so many people, there haven’t been many people that I know that have had it. Beyond our household, no one else in my or my husband’s immediate families has. I have one extended relative who was also hospitalized with COVID pneumonia at the same time I was. (We live several hours apart and hadn’t seen each other in over a year.) There’s only one friend I have seen in the past 15 months that I can think of that’s had it. A number of acquaintances have had it, but I don’t have many people I could call up to commiserate with or compare how we’re doing.
Not only is there a feeling of isolation when there’s no one who has gone through what you have, but it can leave you with a feeling of hopelessness — like you might never get better or back to normal. Even doctors don’t seem to have answers.
Learning from others that there is hope
Not too long ago I learned about an online group called Survivor Corps. According to the organization’s web site, Survivor Corps is one of the largest and fastest growing grassroots movements connecting, supporting, educating, motivating, and mobilizing COVID-19 survivors to support all medical, scientific, and academic research. It has a related Facebook group that is made up of people from all over.
Facebook is obviously not the place to go if you are seeking medical advice or looking for a reliable source of medical information. But when there’s no one else in your life who has experienced what you have, it helps to be able to scroll through comments made by others and learn that there are people out there who have gone through something very similar. You come to find out that what you thought was uncommon is actually happening to a lot of other people.
Some of the stories are encouraging and give you hope. Others make you aware of how lucky you are to have made it through without major life-altering symptoms. I guess you could call it an online support group. Whatever you want to call it, it has been a useful tool in moving forward. You learn from others that they, too, have had a long road to recovery. You learn to cut your body some slack and realize that it’s healing at its needed pace. You learn that experts still have a lot to learn, that this is all still very new, and that we’ll likely be learning more new things about it for a long time.