Talking to other people living with long COVID has helped me, but finding the right people can be a challenge.
Am I Alone?
There are a lot of people with long COVID.
The CDC frequently publishes survey results on long COVID. The latest numbers from the May 28 - June 24, 2024 survey:
- 18.4% of US adults have ever experienced long COVID
- 5.3% of US adults are currently experiencing long COVID
- 4.4% of US adults currently have long COVID symptoms that limit their activities
- 1.4% of US adults currently have long COVID symptoms that limit their activities “a lot”
(“Long COVID” means symptoms that last longer than 3 months.)
This data shows that most people who get long COVID recover. It also shows that a lot of people are sick right now, so you should be able to find some in your social network.
Finding People in Real Life
Finding people in real life to talk to is my preferred option. If I share that I have not recovered from COVID after months, many people say, “I know someone with the same issue.”
My long COVID clinic hosted a class on how to recover. The best part of that class was connecting with other people living with long COVID. I still keep in contact with some of them on a weekly basis.
I have also found it helpful to talk to other friends who have other chronic illnesses. Many of our experiences with the healthcare system, etc. are similar.
Support Groups
I have had trouble finding long COVID support groups that meet over video conference or in person.
I have heard that the Bateman Horne Center has support groups which they announce in their email newsletters, so that may be a place to start.
Mayo Clinic Forums
The Mayo Clinic hosts a moderated online forum on long COVID. I tried participating, but it didn’t seem like they had enough traffic to be useful to me. It’s worth a try because that might change over time.
Phoenix Rising
Phoenix Rising is an online community of people living with ME/CFS that also now covers long COVID. I have done a little searching on this forum, but have not really participated.
Some people with long COVID develop ME/CFS, but they aren’t exactly the same. Regardless, many of the symptoms and treatments are similar. The recovery rate for ME/CFS is very low, around 5%, which in terms of an online forum can be helpful because it means there are people who have been living with it for decades, which can lead to decades of wisdom. Knowing you will be sick for a long time can also lead to an acceptance that can be helpful.
I have tried participating in some subreddits, but eventually stopped because the anonymous online interactions were causing me unnecessary stress.
Reddit is anonymous, so you are never really sure who you are talking to. Of course that’s true of any online forum, but it seems particularly true of reddit. You might be talking to any of these:
- real person living with chronic illness
- someone engaged in “karma farming” trying to just build more karma on the platform
- commercial company promoting their product or service
- troll who thinks it is fun to torment people with chronic illness
- automated bot
- who knows what else?
Reddit’s system of up and down voting definitely does not cause the best medical advice for chronic illness to rise to the top. The posts that get the most up votes usually have strong emotional content.
Posts also scroll off the leader board relatively quickly, so it is not really possible to have a thoughtful discussion. It’s also difficult to develop real-life relationships outside of reddit.
Very few people who have recovered participate in the subreddits. I completely understand because once you are well, the last thing you want to think about is long COVID. As a result, the advice and suggestions are mostly from people who have not recovered, not from people who have. That’s an important bias to understand when reading the forums.
r/cfs
The subreddit r/cfs is for people living with ME/CFS. My perception is that many people in this forum live in the UK. As I said before, some people with ME/CFS have decades of experience, which can be helpful.
The new member post has some good, basic information.
The FAQ has a wealth of resources that can be useful to someone with long COVID.
r/covidlonghaulers
r/covidlonghaulers is the largest, most active long COVID forum I have found, but I find it painful.
Remember from the CDC numbers above that most people with long COVID recover, but nearly everyone who participates in this forum is still sick. That introduces a negative bias to the discussion.
Quite frequently people post their active suicidal thoughts. I feel for these people, but I don’t have the resources to help them, both because it is an anonymous forum and because I am sick myself. For my mental health, I need to avoid a constant barrage of messages from suicidal people. (We actually know a lot more about depression and suicidal ideation than long COVID, so if you are having thoughts like that, you can go to the emergency room. You can also call or text 988.)
For a while I tried to answer questions and provide references to legitimate medical resources, but I got negative or non-existant responses so often that I stopped. I suspect the same is true for many other people who tried to help.
I have used this forum to search for experiences of people with different treatments. Just remember that the people writing are the ones who have not recovered.
It is tempting to seek emotional support from a group like this, but I don’t think the format or the participants facilitate that. For emotional support I would search out people in real life as I described above.
r/LongHaulerRecovery
I believe r/LongHaulerRecovery is a reaction against r/covidlonghaulers, where they tried to only discuss recovery stories. It is much more positive than r/covidlonghaulers, but also has much less traffic, so less information.
r/LongCovid
r/LongCovid is run by a commercial company trying to make money off long COVID. On their website it says, “COVID Care Group, LLC, is not a ’not for profit’ organization. Donations, gifts & memberships are not tax-deductible.” More than 5% of US adults currently have long COVID, so they have a huge market opportunity.
Read concerns about this subreddit.
Conclusion
My recommendation is to use the forums for research, but seek real-life connections with other chronically ill people.