[Mz]

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.

[vga15]

Whoa. Wasn't expecting that. Firstly, do not let go of your intense need/desire to fix this. There's someone out there who could really use your insights.

Reading through, couldn't help flash back to circumstances I've been through personally. The flawed medical system isn't new to me. Been called a hypochondriac. Prescribed tons of antibiotics. 'Irritable bowel' 'stress' 'migranes' 'whitecoat blah'; how quickly they'd come up their diagnosis. And, I'd gotten out (almost there) of my messed up state through a similar path as yours. Via massive dietary and lifestyle changes. Though, certainly nothing compared to what you've been through, and I've been trying to raise hell against the med community for quite a while. My folks are doctors; so I've had an insider preview of how bad things really are.

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Back to the CF community, Would it be possible to get them on board, if you started over from a different perspective?

You've probably seen http://crohnology.com/. Certainly could derive a lot of inspiration from there. (including the HN post)

Existing communities might be harder to penetrate. Especially ones that're heavily moderated. BUT, I'd bet there's a ton of folks who share your opinions about the med community, and the ways they diagnose & treat symptoms.

What might the other reasons for why you've received those strong negative reactions be?

I'm all for the simulation/game idea. I'd even recommend starting a movement over on Kickstarter, if you don't mind the publicity. Although, it might be better if you'd build a new community from scratch first. Share your story, tell them what the goals are, speak of your vision. Trust me, it'll resonate with a whole bunch of folks. Much like 'crohnology' did.

AND, like you'd mentioned, the folks most active on these communities might have been there for quite some time, and to suggest something disruptive would do nothing but ignite a wildfire. Could possibly start with those who've been diagnosed recently. The clueless ones. Perhaps the ones who haven't yet reached out for support. At a point where they're confused, looking for options, and they're just hoping some (usually clueless) doc has all the right answers. Of course, you'll still have to answer the question about how you'll actually get to them. Google adwords & seo, if not anything else.

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Lastly, I'm not sure you should pursue this with monetary goals in mind. Although, it'd be ridiculous to ignore the possibilities. Imagine all the positive press/attention/network/connections you'd attain, by starting a 'movement'. In a day and age where every other person seems to be trying their hand at the popular little social gizmo idea of the moment, making a real impact ensures you'll stand out like boeing 747 on a highschool playground. You've got a great story here. Leverage it. Save some lives.

Would you be willing to discuss your thoughts on how the simulation/game would work? What would the flow be like? How might it convince them about the changes they'd need to make?

[Mz]

I'm pretty tired today. Will touch on a few points. I reserve the right to reply more later, should I come up with more to say.

Other reasons for hostility: As you noted, those who have been around a while and were "big names" in the CF community were often my biggest opponents. I can be pretty charismatic and I was stealing their thunder. I think I must have been the cutest 3 year old in the history of the universe (or at least treated that way by the people I knew -- I don't mean it too literally) and got socialized in a problematic way. I have used all the really horribly negative feedback to help me root out some of the stupid crap from my childhood. I don't share the health info out of ego but it's easy for me to soak up the limelight and then miss the fact that nothing constructive is being done, that the issues are not being discussed because people who are miserable have gotten distracted by a relatively rare feel-good moment in their lives. It's taken a lot of effort for me to learn to work this from another angle. In that regard, it's definitely been a growth experience.

Additionally, I am of the opinion that doctors and drugs are part of the problem. This doesn't go over well with people living with a death sentence whose doctors and drugs help keep them alive. They can't imagine a solution that doesn't involve serious drugs. So they do fundraisers for the CF Foundation to the tune of thousands or tens of thousands of dollars (and spit in my face for having ads on my site). The CF Foundation is in bed with big pharma and looking to develop better drugs (to line the pockets of the industry that gives them millions every year). Many in the CF community bitch about what doctors do and what the CF Foundation does and all that but the mantra is also "drug side effects are a necessary evil".

Also, I threw out everything I ever owned, got divorced and moved cross country to break the cycle of infection. This is very scary stuff for people who are ill, financially dependent on their spouse because they are often too sick to work, and dealing with large medical bills and so on. They are scared, and with good reason. The things I did sound very risky. They really aren't. It was a slippery slope and one thing led to another in a logical fashion. It wasn't anything radical, but trying to compare the life I have now to the way they live makes it sound extremely radical.

I have found that people with a newly diagnosed child or who have been doing alternative stuff for a long time are more able to understand and use the information I share. Other people just can't fit it into their "disease model" mentality if they are too entrenched in conventional treatments.

I do have a tiny private email list. Some months ago an older man joined who has been doing alternative stuff a long time. He was able to ask good questions and start the conversation somewhat there. That list might eventually grow.

Cynical observation: At least one woman who was incredibly ugly to me has already died. Doctors don't know how to get people with CF well and the life expectancy is pretty low (around 36 or 37 in the US). So all I have to do is outlive my critics and eventually a new generation will be there who hasn't been psychologically poisoned yet and those folks who hate me won't be around to trash me. <shrug>

I don't think I ever mentioned monetary goals. There really aren't any. I hope to make money another way. The current tentative plan is to make money via a web comic, which hasn't been launched yet. I am okay with sorting out what flies and what doesn't based on what fails (or even fails to launch at all). Another interest of mine is clothing. When I was younger, I wanted to be a fashion consultant. I've done a few posts here inquiring about the clothing space. Now that I have a full-time job (I was a homemaker for 2 decades), it is clear to me that a better paradigm for office wear for women is desperately needed. We currently have basically two paradigms for how women can dress: A) sluts R us and B) She's a man, baby. We desperately need "power dressing for women, and no I'm not some imitation man, thank you". I think I am somewhat uniquely qualified to try to promote such an idea, though I can't figure out if actually producing a clothing line would be the way to go or if there is some other path to promoting that...and a million other details.

FWIW: I was quoted in a health book at some point under my full name. It lists my diagnosis and the diagnosis of my son. One of the co-authors has two children with CF. So my name is getting out there, albeit slowly. I'm okay with that. The CF community needs time to absorb it. I'm a pretty shocking figure and have long been a lightening rod for controversy, regardless of the topic. Before going down in flames in CF-land, I used to be routinely at the center of a firestorm of controversy on gifted/parenting lists. I would kind of like to get back to updating my parenting site as well, but it has the same issue my health site has: No direction and no audience because no one will talk to me. I burned a lot of bridges while going through drug withdrawal. People were far more forgiving and tolerant while I was a basketcase. I think probably people stopped being tolerant and forgiving because I got well. I think it probably makes it harder for them to accept their own personal failures and excuses in life and that is more unforgivable than the rampant foot-in-mouth disease I suffered while in constant excruciating pain and doped to the gills. When I was a basketcase, they could be nice about it and feel good about themselves and be glad their life was better than mine.

As for the game, there are a million little things I do to avoid exposure to germs, fumes and so on. It's hard to convey that in written word. I also want to present the mental models I have for how you build health and gradually alter your body chemistry so you don't need the drugs. Every single thing you do every single minute of every day impacts your body chemistry, the germs you carry (and we all carry millions of microbes -- you can't even digest your food without them) and so on. The power to beat this deadly condition lies in the many small things that get done. CF is so deadly that people want to nuke the body with really strong drugs, which worsens the problem in the long run. They need to build up the body, and do so gently. And until it is rebuilt, it needs to be protected from all kinds of stuff that wouldn't be a big deal for a "normal" person. Afterwards, many of those things need to be maintained. Healing the body does not make the genetic defect go away. But it can be compensated for so it isn't so disastrous, just like being Caucasian doesn't doom you to being chronically sunburned to the point of peeling and then dying of skin cancer at an early age. There are things you can do to protect yourself. The complex, myriad set of choices I make through-out the day are critical to my ability to stay off drugs. That needs to be conveyed somehow. Right now, people hear "just stop taking drugs, they are bad for you" and rightly react to that with "are you nuts??? that would kill me!" Of course it would. You can't simply reject drugs and live with CF. You have to find non-drug approaches that work to make the drugs unnecessary before you can leave them behind. And that's an extremely hard point to convey.

I've been told a Rogue-like game would likely be the best place to start for modeling some of the data I want to convey, like tracking germ exposures, body chemistry, etc. I do not have first hand familiarity with such games. This was feedback from my adult son with CF who plays a lot of games.

[vga15]

Been a long day. Sorry for the late reply again. BTW, haven't had a stimulating conversation like this in a while.

I'm glad you've looked through the situation from different angles. Sounds like you've learnt lots.

Wow. You've made some drastic changes to your life. Freaky indeed. On the upside, you've beaten this huge monster of a disease.

It's great that you've got a list already. Also great that you've been featured in a health book. Perfect bunch of reasons for why it'd be great if you'd consider raising some funding over at kickStarter. Take things to a whole other level. It'll help you collect your thoughts about how you'd build an ideal community for CF-conquerers. Where members could share what worked for them, have very customized 'plans of action' even. (hope you've explored http://crohnology.com) You'll need some funding for the game, as well as the ad campaigns, etc. Also, with this one move, you'd have built up a list of 1000's. I'd be glad to help out a little, if required.

What is your web comic about? Have you got a marketing/distribution plan handy? Webcomics certainly are interesting, but I'd say the existing publisher/writer distribution model sucks to say the least. I recently convinced a friend of mine, who'd been turning his freshly baked novel into a web comic, to turn it into a Facebook game instead. Drove the idea's monetization potential up a hundred fold possibly.

"power dressing for women". Love the idea. Feel you certainly should pursue it in some form or the other. How about starting with a dribbble/pinterest-like community for fashion designers. Get them to submit ideas etc. I'd be more psyched about curation/community, utilizing network-effects and so on. Than a pure clothing line. But either way, you'll get a lot of great feedback from HN about the most vital parts -- e-commerce, marketing, seo etc. An internet-first clothing line around this concept seems doable, and the community aspect 'empowering women' etc. would drive it ahead. Every successful business needs to start with inspirational stories. And you've got plenty of 'em.

Interesting that you'd say people weren't as forgiving 'cause you got better. This seems quite plausible. Empathy is indeed a depletable resource. Reading through, can't help but feel inspired by your attitude towards all of this. Massively inspired.

You haven't elaborated on the mechanics of the game yet. But I love the idea of the shift in mental models -- leveling up on the characters health through subtle changes that can be visualized. What might the game look like? 2D side-scroller? top-down/isometric? (farmville/diablo) 3d environments? text-based? (like mafia wars) What sort of environmental / personal changes would the character make? I've gotten myself all worked-up about the game concept. Would love to send over a single page write-up of what I imagine this should look/play like, if you don't mind ie.

I'm really curious about the 'complex set of choices' you make throughout the day. Have you considered parallels that could be applied to curing other diseases. More often than not, there tends to be subtle links between certain diseases.

[Mz]

Would love to send over a single page write-up of what I imagine this should look/play like, if you don't mind ie.

Please do send it over. Email address is in profile. And we can continue this conversation privately.

I'm really curious about the 'complex set of choices' you make throughout the day. Have you considered parallels that could be applied to curing other diseases. More often than not, there tends to be subtle links between certain diseases.

I'm pretty sure a good bit of it would generalize. I mostly learned how to heal my gut from an autism list (I have two ASD sons and gut issues are really common in ASD kids). The CF community knows rather little about how to do that. People with CF are still human and our bodies still mostly work like that of other humans. One channel in the cell is defective and this makes a few things go very, very wrong. Some of the issues found in the CF community seem fairly common to citizens of 1st world countries generally, but are just taken to real extremes. For example, acidosis is a major issue with CF, one largely overlooked by doctors. Addressing that issue did quite a lot for me. From what I gather, the modern American diet is generally too acid and many of the health issues we have are likely made worse by widespread acidosis, though probably generally milder than what people with CF go through. One issue that seems likely impacted by acidosis is diabetes. People with CF are at high risk for "CF related diabetes" and diabetes is rather common in the US.

I've had quite a long day. My apologies for not replying more thoroughly at this time. I look forward to getting an email from you.