[DoreenMichele]

controlled trials proving that secretion management (e.g. DNase),

The current mental model is that people with CF overproduce mucus and are drowning in their own mucus. I believe this to be incorrect. We underproduce mucus. Giving the body what it needs to produce enough mucus makes a big difference. Inadequate mucus production is one of the ways the body's immune system is compromised and fixing that is entirely about proper nutrition.

I am well aware of the increase in life expectancy thanks to better drugs. I also used to take about 8 or 9 maintenance drugs and they made life not worth living. I was in constant excruciating pain for 3.5 years. No amount of pain medication really stopped it and my sleep quality was atrocious. I got better in part because I wanted to hurt less and I did not care if that accidentally killed me.

I had a life before my diagnosis. After my diagnosis, all I had was drugs staving off death. I frankly can't comprehend why more people with CF don't commit suicide. It's a horrible way to live.

All the drugs have a six page handout listing side effects. They trade short term gains for long term costs, take credit for the benefits and blame your genes for long term negative impacts.

I am not against drugs. I was thrilled to get a diagnosis and be able to ask for Zithromax up front. But there are things very, very wrong with our current approach. If anyone but a doctor did such terrible things to someone, they would be charged with a crime.

I think I was unwelcome on CF lists in part because people who had literally tortured themselves or their child balked at hearing that maybe you don't have to be tortured. I think accepting the torture and making their peace with it was a necessary psychological survival mechanism and they probably could not even name their objection to what I was saying.

I don't hate physicians either. I'm having a terrible, terrible day and speaking to these issues on HN is basically evidence that I have finally snapped. I don't like hurting other people. But trying to not hurt other people is essentially killing me. These are things I cannot discuss anywhere. It isn't socially acceptable. And that is part of the problem. Other people not only can't speak of it, many seem incapable of even thinking about it. It isn't acceptable for someone with CF to want a life. Just not dying yet is supposed to be all we aspire to and that's it. And I am incapable of swallowing that.

[dokein]

Our current mental model (which is a bit more complicated than what is endorsed) is built upon evidence. The genetic mutation leading to CF was discovered, and the treatment (based on investigating this, rather than trying compounds at random) has extended lives.

Before clinical trials, doctors gave advice based on anecdotes (i.e. "experience"). As a whole we seemed to do no better than random chance, but we made sure to take credit for patients who naturally recovered.

Your experiences are important and 100% relevant to yourself, and nobody can ever devalue that. And it's also true that our understanding of the human body is extremely limited. But it's not clear to me that the magnitude of your personal suffering leads to generalized knowledge or a better mental model.

[DoreenMichele]

I don't believe so. I saw one study that said people with CF underproduced mucus. I used to have a link to it, but I think it disappeared at some point.

I have seen at least two discussions online about how vaginal dryness routinely ruins the sex lives of women with CF. I have yet to meet a woman with CF who brags that CF means she can handle 10 men a night at her regular orgies. Yet women with CF also produce a lot of goopy vaginal drainage, no doubt from infection. But it isn't mucus. If it were, vaginal dryness should not ruin their sex life.

I posit that people with CF are coughing up phlegm which is drainage from infection. Helping them produce healthy mucus can eventually put a stop to that.

My oldest son has the same diagnosis. I know other people with CF who have taken some pointers from me. It isn't accurate to say it is merely the anecdotal stories from a single person.

I appreciate you commenting. But our current mental models are inadequate and it is incredibly tiresome to be told for 17 years that I know nothing, my track record of success is just luck or something, etc.

Mental models tend to change only when the old guard dies. This is historical fact.

We probably should not waste anymore of each other's time. The odds are poor that it will be constructive.

[dokein]

Alright, I hope you continue to do well and wish you the best.

[hateduser2]

Why would you think this isn’t a socially acceptable POV? I’ve never heard it before and it doesn’t come across as noxious to me.

[DoreenMichele]

And yet it is being downvoted, which is one of the more polite responses I get. It used to be a lot uglier (even on HN, which is generally a bastion of civility) and I left a lot of lists, or was thrown off of them, where it simply wasn't constructive for me to try to participate.

[bitcrusher]

I would suggest that part of the reason is that it comes across as you having an axe to grind, rather than what you’re saying. The conversation was one party agreeing with you about there not being great treatment options until recently when studies have finally been conpleted with you saying, ‘you’re wrong, my experience proves it, anything you say is an attempt to invalidate my experience’

That is quite probably not at all what you intended but that is how I interpreted that exchange.

[DoreenMichele]

The enormous degree to which I am repeatedly invalidated is apparently lost on you. If I were being taken at all seriously then people would be asking me how on earth I am doing this, not being faux respectful on a foundation of "obviously she is full of crap and knows nothing."

Doctors never have any interest whatsoever in how I am getting healthier. They merely assure me it has zero relevance to anyone else on the planet.