I am so sorry for all of us suffering so alone. It is definitely a very lonely disease.
I suppose I have myself a very mini-support group within my family itself - with me and my kids. I guess when I put it that way... it's kind of sad.
My family is generally not supportive for various reasons. My mom cares, but she chooses to protect herself by being in denial.
The ILs were very interested with Kid#1 being sick, but now that he is better, they show absolutely no interest or understanding with the rest of us being sick (I actually think they don't know Kid#3 and me are positive/treating too). Ironically, the MIL tended to favor Kid#1, so I wonder if that's part of the reason. Or whether they are just getting older and also living in denial.
Or they only see us when we "look" well enough, but their visits don't show the dark flare-up, high symptom days.
I have a few close friends who are amazing listeners.
But even another of my closest friends doesn't have a clue at all even though she fully knows how much we struggle. She just doesn't get it at all.
It's definitely a very lonely disease. This is one of the reasons why I am here on this board... feel like it's the only place that truly understands and is supportive. Heck, even if you don't agree with something, at least we can respectfully discuss. I don't have that IRL with my support network. They have no clue at all when I talk about
methylation, coinfections, CD57, hbot, herbals, etc....
I am very tired. And very alone.
Kid#1: Extremely sick for several years, very difficult to treat, but much better lately!
Kid#2: Very sick now despite being treated for years, very bad year
Kid#3: Doing great, minor relapse, but great again (ironically had least and shortest treatment)!
Me: Adv Labs positive 2016 (suspected I passed to my kids) - not as sick as others, mostly battling fatigue, kidney, heart, and yeast issues