Ask HN: Dealing with controversy
6 comments
Whatever your method is have you successfully shared it with anyone. Are the doctors concerned that you had a specifc form (atypical!) and that those with some other form will be tempted to avoid medication to their own detriment. How ahve you been sharing your info. Is there some way you could persuade a medical professional to do a study on you to see how your CF has progressed and whether the initial diagnosis was sound so as to determine if a new treatment based on your modus can be achieved?
I have a website where I share info as best I can: http://www.healthgazelle.com And I participate in discussions in online forums. EDIT: And I joined HackerNews because I concluded that I need to learn a programming language and write a simulation to overcome the information gap between my mental model and current mental models.
"Atypical" is not a specific form per se. It is a term used to describe diagnoses that fall outside of "classical" symptoms/experiences. In recent years, more mutations are being identified and generally milder expressions are being recognized as still causing the same general profile of problems, but to a usually less severe degree. My mutations and my sons mutations have not been identified, in part because my doctor's request for a more comprehensive test was denied by my insurance company. (This is one of the points used to attack me and say I don't "really" have CF -- never mind that I spent about a year at death's door and came back from that.)
I have had a few people try some of my suggestions and report good results. Two of the most dramatic: Someone with an antibiotic resistant infection went from testing as sensitive to 7 drugs to testing sensitive to 15 drugs in just 3 months. He also generally feels better, sleeps better, etc. In another case, a mom with a young teen whose lungs were in such bad shape they were talking about listing her for transplant began using some of my suggestions. About a week later, her child was so dramatically improved they apparently weren't discussing listing her anymore. (I have had updates from the first person but not the second one, so that may no longer be true.) Her doctor did express interest into looking into one of the supplements I had suggested.
Most research that I know for treating CF is drug research. I have gotten off all drugs. Most research is funded by drug companies. At the moment, I really don't see doing any studies or talking anyone in the establishment into being interested in what I am doing. I believe the top-down approach to treatment which is the current norm is part of the problem. So I believe that the solution requires a grass-roots movement, not more edicts from on high.
"Atypical" is not a specific form per se. It is a term used to describe diagnoses that fall outside of "classical" symptoms/experiences. In recent years, more mutations are being identified and generally milder expressions are being recognized as still causing the same general profile of problems, but to a usually less severe degree. My mutations and my sons mutations have not been identified, in part because my doctor's request for a more comprehensive test was denied by my insurance company. (This is one of the points used to attack me and say I don't "really" have CF -- never mind that I spent about a year at death's door and came back from that.)
I have had a few people try some of my suggestions and report good results. Two of the most dramatic: Someone with an antibiotic resistant infection went from testing as sensitive to 7 drugs to testing sensitive to 15 drugs in just 3 months. He also generally feels better, sleeps better, etc. In another case, a mom with a young teen whose lungs were in such bad shape they were talking about listing her for transplant began using some of my suggestions. About a week later, her child was so dramatically improved they apparently weren't discussing listing her anymore. (I have had updates from the first person but not the second one, so that may no longer be true.) Her doctor did express interest into looking into one of the supplements I had suggested.
Most research that I know for treating CF is drug research. I have gotten off all drugs. Most research is funded by drug companies. At the moment, I really don't see doing any studies or talking anyone in the establishment into being interested in what I am doing. I believe the top-down approach to treatment which is the current norm is part of the problem. So I believe that the solution requires a grass-roots movement, not more edicts from on high.
What did you do that was supposed to be "impossible"?
What do you mean by "attacked"? (Phyiscally?)
"Controversies"?
The whole thing is very vague. :-)
What do you mean by "attacked"? (Phyiscally?)
"Controversies"?
The whole thing is very vague. :-)
Ooh, I was intentionally being vague, cuz I was hoping to avoid getting into it here. :-D
I was diagnosed with "atypical cystic fibrosis" in May 2001. I was extremely ill at the time. I had been bedridden for 3 1/2 months earlier that year. My doctor told me "people like you don't get well, symptom management is the name of the game". My oldest son ended up with the same diagnosis and had not been on antibiotics for over 3 years at the time that he and I were diagnosed. So I just couldn't accept the pronouncement that I should simply accept a slow, wasting death as my only possible lot in life.
I am currently drug free. I got off the last of my medication in early summer this year. I have not been on antibiotics in close to 6 years. I got off digestive enzymes (that I am supposed to need "for life") a little over three years ago. I am well enough to work a full time job for the first time in my life. I live without a car (in part because what I've done has been fairly expensive and not covered by insurance, so it all came out of my pocket and my pockets aren't deep). With living without a car, I do quite a lot of walking as part of my lifestyle -- something I'm probably supposed to be too sick to pull off....etc.
Attacked: No physical attacks (so far). I have had someone imply that I am a neglectful mom because my adult son with CF has chosen to not see a doctor since he turned 18. The fact that he is healthy is apparently irrelevant. If you have CF, you are supposed to get checked several times a year. The fact that we were diagnosed late in life and so for most of our lives went to the doctor only when sick (like normal people do) and we aren't sick right now is apparently no excuse for such heinous behavior.
I have had people imply I am a charlatan, an attention-monger, have Munchhausen. I have had people accuse me of being up to no good because there are a few ads on my website, so clearly I am a snake-oil salesman as anyone trying to make money off of health information is not to be trusted. (These same folks routinely say you need to run everything past your doctor. It seems lost on them that their doctor makes a lot more money than I do and might also be subject to conflict of interest.) I have had someone imply that my son is the product of an incestuous relationship. I have had people imply that I fast-talked some doctor into signing off on a diagnosis of CF for no real reason...and similar.
I've seen controversy before. I used to go down in flames routinely on parenting and homeschooling lists, where, on the one hand, I was quite "popular" (or at least a vocal minority liked my ideas) and, on the other hand, I tended to be a lightening rod in part because I did a lot of things that didn't agree with the norm -- much as I still do in terms of my health. However, at the time, I was also doped to the gills, in constant excruciating pain, had horrible insomnia and was simply very ill. I guess I had fantasies that when I stopped being doped up, in pain and very ill, all this crap would go away. I do cope better with it and I manage to generally not put out fires with gasoline these days <grin>, but I remain at the eye of the storm. It's really gotten to be quite tiresome. Sigh.
Thanks for engaging me in conversation.
I was diagnosed with "atypical cystic fibrosis" in May 2001. I was extremely ill at the time. I had been bedridden for 3 1/2 months earlier that year. My doctor told me "people like you don't get well, symptom management is the name of the game". My oldest son ended up with the same diagnosis and had not been on antibiotics for over 3 years at the time that he and I were diagnosed. So I just couldn't accept the pronouncement that I should simply accept a slow, wasting death as my only possible lot in life.
I am currently drug free. I got off the last of my medication in early summer this year. I have not been on antibiotics in close to 6 years. I got off digestive enzymes (that I am supposed to need "for life") a little over three years ago. I am well enough to work a full time job for the first time in my life. I live without a car (in part because what I've done has been fairly expensive and not covered by insurance, so it all came out of my pocket and my pockets aren't deep). With living without a car, I do quite a lot of walking as part of my lifestyle -- something I'm probably supposed to be too sick to pull off....etc.
Attacked: No physical attacks (so far). I have had someone imply that I am a neglectful mom because my adult son with CF has chosen to not see a doctor since he turned 18. The fact that he is healthy is apparently irrelevant. If you have CF, you are supposed to get checked several times a year. The fact that we were diagnosed late in life and so for most of our lives went to the doctor only when sick (like normal people do) and we aren't sick right now is apparently no excuse for such heinous behavior.
I have had people imply I am a charlatan, an attention-monger, have Munchhausen. I have had people accuse me of being up to no good because there are a few ads on my website, so clearly I am a snake-oil salesman as anyone trying to make money off of health information is not to be trusted. (These same folks routinely say you need to run everything past your doctor. It seems lost on them that their doctor makes a lot more money than I do and might also be subject to conflict of interest.) I have had someone imply that my son is the product of an incestuous relationship. I have had people imply that I fast-talked some doctor into signing off on a diagnosis of CF for no real reason...and similar.
I've seen controversy before. I used to go down in flames routinely on parenting and homeschooling lists, where, on the one hand, I was quite "popular" (or at least a vocal minority liked my ideas) and, on the other hand, I tended to be a lightening rod in part because I did a lot of things that didn't agree with the norm -- much as I still do in terms of my health. However, at the time, I was also doped to the gills, in constant excruciating pain, had horrible insomnia and was simply very ill. I guess I had fantasies that when I stopped being doped up, in pain and very ill, all this crap would go away. I do cope better with it and I manage to generally not put out fires with gasoline these days <grin>, but I remain at the eye of the storm. It's really gotten to be quite tiresome. Sigh.
Thanks for engaging me in conversation.
Thanks for elaborating.
I strongly recommend you find a trusted friend/family member/mentor/etc. to talk with about your concerns. It's really difficult to get a handle on a situation as complex as what you've described without knowing you personally. So I can't really say anymore than that.
But please do take my advice. I wish you well. :)
I strongly recommend you find a trusted friend/family member/mentor/etc. to talk with about your concerns. It's really difficult to get a handle on a situation as complex as what you've described without knowing you personally. So I can't really say anymore than that.
But please do take my advice. I wish you well. :)
I do have some supportive friends and family. I had really hoped this would be a general conversation about how people cope with controversy in dealing with "the public", whether it's a forum or your own website. That's part of why I didn't want to go into specifics in my opening post. I really don't think anyone can tell me what to do about my specific situation. I was hoping people would tell me what they have found helpful in dealing with their own controversies. I think that would be both more helpful to me and of more general interest to the audience here. My very specific niche worries are unlikely to be anything anyone here can really relate to.
But thanks for your concern.
But thanks for your concern.
In some ways, I'm "sensitive". Yes, I'm "sensitive" in terms of "not liking getting attacked", but I think the other side of it is I am just very aware of even relatively small things that are actually a form of hostility that most people wouldn't notice. On the one hand, this is often a subjectively very un-fun awareness. On the other hand, it has allowed me to accomplish something most people couldn't accomplish, and that is making it possible to discuss new ideas that most people can't effectively introduce. This turns me into the lightening rod for such controversies, I think in part because it's clear to a lot of people that if they can shut ME up, they can close the uncomfortable topic altogether. But I think another part of it is that publicly it gives the appearance that I am the cause of the whole thing rather than that I open the door for latent demand/interest which has been suppressed.
This is relevant to my goals as far as websites and such because the only way there will be an audience is if it becomes possible to have such conversations. Otherwise, I am merely the Lunatic Fringe and all too easy to ignore.
Any thoughts?