Reactions of others to your long Covid

Nobody in my family/friends has brought up any worries on their end.
The worst part is they don't understand what your going through.
Nobody does unless they to are going through it.

I understand why people would assume you were contagious. Covid has been so invisible—so ANY manifestation is grabbed onto and declared “proof of infection”. The problem is that there IS no way of intuiting whether someone is contagious at all. The bigger issue for you is that having Long Covid and having an active Covid infection are like comparing apples and ….Ferris wheels! No one is in any danger because you/when you feel horrible. This is very much like other serious cell-based illnesses— like cancer, for example. You cannot catch breast cancer by being near someone with breast cancer. You may want to (?) use this analogy with your craft group or church leaders. Like cancer, there is nothing they can do —EXCEPT acknowledge how awful it is and cut you enormous slack for failing to attend, forgetting to notify, being too tired to bring snax when it’s your turn, etc.
I hope this helps.

I appreciate this perspective and ideas to explain it.

I start out with "I've been covid negative for ... but still have symptoms". Otherwise, people (health care workers particularly) get a rather fearful look on their faces. As I found out with celiac disease, you may have a long-term illness but most people have short-term empathy. Best to find people and groups that you can share with because it is a grieving and isolation problem. Morphing from an athelete into a couch potato is life changing, and hopefully goes away but ...when. Regarding covid and GI problems, you might consider an elimination diet, to see if some foods cause problems. Autoimmune diseases can result from viral/bacterial infections (my celiac started after H1N1 flu years ago). Probiotics are good if covid screwed with your gut bacteria.

I'm just learning I have long Covid. I live in a senior apartment building and caught it when it was going through the entire building in late January. Most people, even some who knew they'd been diagnosed with Covid, didn't wear masks or self-quarantine, because it was only like a bad cold for them. They ignored all the posted warnings and precautions and sat tigether in areas that were declared closed.

Then I was taken away in an ambulance and hospitalized. After I came home and spent a week in quarantine in my apartment, I was assured I was no longer contagious. But I was also told I could test positive for 90 days, and it was possible, though highly unlikely, that I could relapse but be asymptomatic during that period. So I made the choice to wear a mask for 90 days, in an abundance of caution, to protect my neighbors.

When they ask about my mask, I say I have long Covid and haven't been contagious for months, but I'm wearing a mask anyway for a little longer. They know I was very sick, and *now* they 've acquired respect for Covid -- as soon as they hear the first part, their eyes pop and they step back from me! Then they ask what long Covid is. I tell them it's when you are no longer contagious but still have all the symptoms and it can last a long time. They still back away from me.

Out in public, I don't say anything. It's normal to see immunocompromised older people wearing masks in stores. I'll stop wearing my mask on May 1, and see how my neighbors react when they see I'm still feeling very bad most of the time. I suspect some of the ones who coughed and sneezed and gathered in the common areas without masks will be afraid I'll still be able to give it to them.

Im sorry you have gone through this. If I knew your circumstances and I saw you with a mask on, I would assume you did not want covid again. Smart on your part. I have been dealing with long covid for a year now. So many issues, ER six times. Hospitalized twice in cardiac. I am a 63 yr old competitive tennis player and never had any health issues. I learned through this, that can change quickly. Take care of you, be kind to yourself. I am refusing to accept this as a way of life and am doing all that I can to continue a
" normal " life. Hang in there 🙏🏻 💓

How extremely frustrating. I also have Long Covid. It has been one full year from my date of infection. I still have many symptoms, most of which are invisible to others. I know I am not contagious, but am in fact very scared to get Covid again so I will continue to wear my mask whenever I go out in public, shopping, around others, etc.. I really don't care what others think. It is because of people that didn't take it seriously enough that I got sick in the first place. "Long term illness with short term empathy" says it all. People don't understand. And the truth is, most people don't know how damaging this virus is to ALL of ones organ systems. Those of us affected do, because we read the articles and research. I will continue to do everything I can to protect myself.