Good lord! We, as a patient population, are still far too willing to let people bully and intimidate us. Yes, they believe all kinds of dreadful things about us because
they are ignorant and lacking sensitivity. That's
their attitude problem, not ours. We should be the ones criticizing them, not the other way around. We don't have to accept the false pictures they paint of us. Just because they believe it, doesn't make it so. We don't have to feel guilty because they are ignorant
and stupid.
We are still in a big political fight with governments and the medical establishment which can affect how we live and how we are treated medically (or not). That battle is far from won. That doesn't mean we have to put up with crap on an individual level from ignorant people who want to shove their pushy noses into our personal business.
We have to convince governments and medical establishments of the seriousness of our illness. We have no choice but to continue pushing that boulder up the hill because they have control over our treatment. They aren't convinced, we don't get the right treatment.
Friends and neighbors are an entirely different matter. They are not writing and enforcing the rules about our treatment. They're just being obnoxious and invasive to no benefit to us. We don't have to put up with them. Yes, we want friends and family to understand and be supportive. Unfortunately, some of them don't want to be and we can't make them. They don't own us. They aren't entitled to tell us who we are or what we think or feel. We need to start telling individuals to stop being so F-ing rude. If they can't be supportive, or at least stop being emotionally abusive, then they need to turn around and get out of our lives pronto.
Yes, quite a number of my "friends" and family are gone from my life now. Some of my family has decided that maybe they want me in their lives more than they want to be critical of me and have come back into my life willing to be supportive even if they don't agree or understand.
Now I am surrounded by supportive people who believe (or at least pretend to
) that I am not well, but am doing the best I can to function. Some of them don't want to hear about the illness or treatment or help me with it in any way, but that's okay. They don't make my life harder. They don't criticize me (to my face at least). They don't get mad a me for not doing things I can't do. Others are more sympathetic. Nobody tries to make me feel guilty for being sick. Some people are helpful and encouraging. It's quite delightful, actually, to be surrounded only by supportive people. There was a price to pay, but it is well worth it.