And when they say that, what I hear is, ‘You’re not working hard enough!’

Because if they thought about it for half a second they’d realise I’m already doing as much physio as I can manage. They’d realise I’ve been doing prescribed exercises for a couple of hours every day since I was a few months old. Physio got me to the point I’m at today.

But according to them physio should ‘cure’ all these things, so clearly I’m not doing enough of it.

Thankfully I’m the healthiest I’ve been for years so i get less of articles on the latest very expensive te=reatment/scam shoved through the letterbox but I still get the odd stupid suggestion.

You know what works best? figuring out what I know my body can handle and learning to live my life around that.

I also hate the ‘saint’ syndrome thing, that if you’re ‘ill’ you can’t possibly do anything to make you worse and thus have to live your life like a saint lest you be blamed for being ill. For example if you eat the wrong food, or stay out all night at a party or something you’re watched with evil eyes, you should be inside sipping detox tea doing yoga not having fun! don’t you know that’s soo bad for you? yes it may not be the best idea ever and I may feel crap but sometimes I take that risk to have a bit of fun.

This is an excellent description of what it feels like to have “well-meaning” people make “suggestions” (which sometimes sound more like commands) for trying various treatment options that may well be unsafe.

It is insulting to patients who invest enormous time and energy into managing their condition(s) to have someone presume they have “the answers” that the patient somehow overlooked or wasn’t resourceful enough to find.

To be clear, I’m not suggesting that I don’t appreciate when people make suggestions to me because they are sincerely concerned and trying to help.

I am talking about those with the White Knight complex… who literally get offended if the patient (me) doesn’t enthusiastically “sign right up” for their idea.

I’ve been chronically ill for 27 years now. I’m 40. It is insulting when people who don’t have a clue of what I have been through try to tell me what they think I should do to “get better” from my numerous chronic illnesses.

I also have a really serious problem with people who misuse the word “cure”. I am incredibly sick of seeing scammers (especially online) claim they have the “cures” for my incurable illnesses. Where’s the peer-reviewed research to back up their “cure” claims? Non-existent, of course.

The scammers make me sick the way they prey on the chronically ill. Many times when people “suggest” treatment options to me, they are “suggesting” supplements that are unregulated/questionable. To be clear, I have NOTHING against alternative medicine. I’m even a certified herbalist. It just sickens me when scammers present their creepy products as “natural” or “alternative medicine” because then it gives “alternative medicine” a bad name. (Alternative medicine has helped me a great deal).

I do not tolerate scammers well. If my mother in law suggests one more supplement to me, I might lose my temper.

Great post!!!

Jeanne
.-= Jeanne´s last blog ..Scam Busters =-.

I once had to spend ages on the phone with my father, while he demanded that I justify to him why I wasn’t willing to try the Lightning Process for my M.E. It was… not fun.
.-= Janet´s last blog ..Further to Beautiful Imperfect: Reclaiming “Love” =-.

I’ve had often-severe Crohn’s Disease for more than 30 years now, since I was 22. And I can’t count the number of well-meaning people who’ve told me I should try this or that diet because they read somewhere that it cures Crohn’s Disease. Do those people really think I haven’t already heard over the last 30 years of every possible dietary or other cure? And did it ever occur to them that maybe I’ve figured out for myself by now that diet changes make no difference for me?

At least people like that aren’t quite as bad as those who confidently tell me that Crohn’s is psychosomatic. All in my head. All I need to do is eliminate stress in my life (as if that were possible anyway, never mind that there’s no real relationship). Or, “I can prove it! You first got sick 2 years after your mother died! Obviously, that was the cause!” I guess they never heard of the post hoc ergo propter hoc fallacy.

Seriously, I’ve had people say insensitive things to me far more for having a chronic illness than for being transsexual.

I JUST got done sending a snappy email response that I’m going to catch hell for over this exact thing. “Here’s a link to a doctor in your city! You should see them, they’re really great!” Oh thanks! My response (it was from my stepmom): That’s nice, but I don’t have health insurance like the rest of our family does. So I won’t be seeing another doctor again for a good long time. I’m sure this doctor charges money. And I’m just too poor. So I can sit here and be in pain for free. /gotohell.