The social isolation alone, as well as being seen as "weak" or "unproductive" is a hell unto itself. I'd LOVE to go back
to work full-time in my old profession. Like many,or most men, I got lots of my motivation at working for a living, and I miss the lack of a social life, too as well. I cant blame people for believing this illness is contagious, so they stay away.
In my case it started with a case of food-poisoning within several hours of eating at a restaurant with friends, but I have read of family members of other ME/CFS patients seeming to become with ME as well, so it's likely that close contact might be contagious, at least in some cases.
I wouldn't wish this disease on my worst enemy, if I had one. Its bad enough enduring the disbelief of doctors and kinfolk, much less enduring it with no cure for this disease in sight.
I cant blame people for believing this illness is contagious, so they stay away.
I don't think they stay away because they think it's contagious. I think they stay away because they don't know how to be with us. Also, lots of them think we're lazy and just making it up, and their scorn keeps them away. Impatience, too, keeps them away. I mean, how hard can it be for us to make an arrangement and stick to it? - They get fed up being let down when we have to cancel. They genuinely don't or can't understand what we experience.
Normals also find talk of illness uncomfortable to be around. So we end up in a vicious circle of having to say we're fine, when we're not, and then having to cancel arrangements because we just can't do it that day. That makes it look like we don't want to see them, because we've already said we're fine......
Most people with no personal experience of chronic ill-health have no sympathy for ME/CFS. I've been ill since - well, forever, really, but it got much worse in the 90's. My social life fell apart. I got cancer in 2007, and all sorts of old "friends" came out of the woodwork.
It was touching until they all disappeared again, because although the cancer is (for now) gone, I'm still ill. Cancer they could deal with, because it supposedly has an end-point. If you survive, you're supposed to be well again. More importantly, it's a globally recognised medical condition with recognised treatments. That gives it a status that ME/CFS just doesn't have yet.
I think they feel that you get social brownie points for visiting a friend with cancer, but social derision for visiting a friend with a chronic condition like ME/CFS.
I survived, but got even more ill than I was pre-cancer. Almost none of my old "friends" seem able to cope with that.
I have read of family members of other ME/CFS patients seeming to become with ME as well, so it's likely that close contact might be contagious, at least in some cases.
I'd be interested to see references on that. I'm strugglimg to see how it can be contagious, but I'm always open to new info
None of my family or my partners over the decades I've had it have "caught" it from me.
If it's viral in origin, which is just one of many hypotheses about the cause, then it would be feasible that other family members would be exposed to the trigger virus at the same time as the original member was.
If they developed it later down the line, they could have either been experiencing a previously dormant but then woken virus (e.g., some herpes-family viruses do that, they lie dormant in nerves for years before being activated, usually by stress lowering the immune defence, I don't know for sure if any other viruses behave like this, but don't see why they shouldn't), OR it's genetic, and family members are likely to develop it because it's that family's genetic disposition to do so.
If yours developed after food-poisoning, I wouldn't have thought there isn't the remotest chance of anyone "catching" it from you now. Food poisoning is bacterial not viral, and leaves the body pretty rapidly. You can't catch food poisoning from close contact, unless the close contact is with bacteria-riddled food!
