I was diagnosed a bit over 10 years ago with "atypical cystic fibrosis". This is a relatively recently recognized, milder form of a very deadly condition. It has all the same issues, but they tend to be somewhat less severe. It's still a very serious condition and I spent 3.5 months bedridden and a year at death's door, in part because I had to get pretty darn sick before doctors took me seriously. I was just kind of low-grade sick all the time and doctors and everyone else treated me like a hypochondriac for most of my life. Because it's genetic, they tested both my sons. I told them which son had it before they ran the tests: The one who was 'like me'.

While mostly bedridden and sleeping 18 to 20 hours a day, I was being routinely denied treatment while they referred me on to yet another specialist and more testing. They were often unwilling to prescribe me anything because they didn't know what was going on. So I ended up doing what I could for myself because I had no real choice: I was being denied treatment and in serious danger of dying. Then, after getting a diagnosis, rather than trying to get me well, doctors promptly informed me "People like you don't get well. Symptom management is the name of the game." I was kind of like "Fuck that. I survived using alternative treatments with NO diagnosis. Surely we can do better than that now that we know what the problem is. Yeeesh!" So I intentionally turned something of a deaf ear to my doctors and the world and sought my own answers for a long time. (People act like I am some whack job who is hostile towards doctors and refused to see them. Nope. They largely refused to treat me. Excuse me for being so gauche as to live anyway.)

I eventually figured out how to get myself (and my son) basically well. Saying this on CF lists elicits two types of reactions: 1) I'm the second coming of jesus christ or 2) I'm a liar, a charlatan and a snake oil salesman. There are more folks who are openly hostile than folks who are adoring fans. Long experience has taught me that it's a very bad idea to engage the adoring fans. It only inflames the haters more and convinces everyone this really is solely about my ego. The fans also have a tendency to say things that are adoring but vacuous. In other words, they basically fawn all over me but don't ask good questions about "so, how exactly did you accomplish that?" This is extremely dangerous, not just because it incites lynch mobs and provokes other people into attacking me all the more but because I don't want anyone doing anything on "faith" in me. I want them to come to a better understanding of their condition and make more informed choices. I don't want someone latching onto some detail of something I said and running with that, without context. Some of the things people with CF have tried is pretty stupid and it shocks me what I have to explain because they are missing the background info. So in order to help them, I need more info about what they don't understand and that means I need them to engage me in conversation, not just adore me and feel "inspired". Making in roads into real conversation is a very hard row to hoe.

I think it would be a shame for what I have learned to not benefit others. But I am also not interested in taking all kinds of abuse or trying to cram my help down the throats of people who are openly hostile and not receptive. Since what I did is largely rooted in diet and lifestyle, unwillingness or disinterest is a show-stopper. This doesn't work if it is not by choice and participatory. I think the top-down medical model is part of the problem anyway. In my experience, the top down approach amounts to "you can't get there from here" in terms of genuine wellness. It simply doesn't work.

At some point, I concluded that one of the issues is that most people in the CF community simply can't wrap their brains around what I am talking about and one thing that would help would be a more information-dense delivery method than the written word currently on my website. I think a simulation (aka "game") would be useful in that regard. But for the moment, I have left most of the CF lists I was on due to the attacks (which often occurred with the backing of the moderators, who then treated me like a loon for suggesting the expectation of politeness and respect from other people which applied to everyone else should also apply to me) and have largely stopped updating the site (in part because I am just busy getting a life but also because the site has been used as a source of ammo by people who are openly hostile).

If I am unable to find a way around this impasse, I am willing to focus on other things and let this go. I got myself well to get my life back, not to seek out new ways to be martyred. I think it would be a shame if I cannot share what I have learned but I'm also not willing to put up with the level abuse that I've been subjected to and I can well imagine it escalating further into far more than mere name calling on some email list. People with CF suffer quite a lot and people die from it, often at extremely young ages. So emotion runs very high in the CF community. I think some people are hostile in part because they have basically tortured their child to keep them alive and they can only live with it because they were told it was the only option. Someone telling them "there's another way and it's more humane" is tantamount to calling them a child abuser. Not my intent at all and I don't agree with that interpretation but I get the impression that's part of why I get so much hostility. There are other reasons why I get such strong negative reactions but this is fairly long as is.

Thanks for asking. It's a pleasure to discuss it with someone actually interested/curious.