Hope Calibration
March 1, 2016 7:36 AM Subscribe
I'm a glass half empty to avoid disappointment type girl. How do I evaluate/survive hopeful news?
I have 50/50 odds of getting a genetic disease that sucks. I've made my peace with this, or am getting there, but my tenuous little mental stability boat is getting rocked by news that a drug that mutes or possibly reverses my disease now has orphan status, that gene silencing is a real thing that could get figured out in the near future, that we'll all have robo-chicken space travelling bodies soon anyway, etc. These things should give me hope, and hope should make me feel better, but I prefer the safety of my worst case scenario security blanket.
What would I need to know to figure out if some new medical hotness is actually a thing that could help my sick family, or prevent disease in me and my not-yet-sick family? Sites/references/anecdata that explain timelines to me would be nice.
Advice on hope calibration in general would also be appreciated. I did my time researching the current state of treatment and the likely future of my disease a few years ago, and it made me panicky, so I stopped. I have been "no contact" with respect to investigating my particular possible future hell since then, and it has worked well for me in terms of giving me space to just live and accept and all that. I talk about it when I feel like it, it is not a secret that this is a thing I live with, I just... don't google it. Does the establishment say that I am doing it wrong?
I have 50/50 odds of getting a genetic disease that sucks. I've made my peace with this, or am getting there, but my tenuous little mental stability boat is getting rocked by news that a drug that mutes or possibly reverses my disease now has orphan status, that gene silencing is a real thing that could get figured out in the near future, that we'll all have robo-chicken space travelling bodies soon anyway, etc. These things should give me hope, and hope should make me feel better, but I prefer the safety of my worst case scenario security blanket.
What would I need to know to figure out if some new medical hotness is actually a thing that could help my sick family, or prevent disease in me and my not-yet-sick family? Sites/references/anecdata that explain timelines to me would be nice.
Advice on hope calibration in general would also be appreciated. I did my time researching the current state of treatment and the likely future of my disease a few years ago, and it made me panicky, so I stopped. I have been "no contact" with respect to investigating my particular possible future hell since then, and it has worked well for me in terms of giving me space to just live and accept and all that. I talk about it when I feel like it, it is not a secret that this is a thing I live with, I just... don't google it. Does the establishment say that I am doing it wrong?
A good friend of mine has type-I diabetes, and this is also the sort of disease where there are constant news reports of miracle cures just around the corner. My sense from talking to her about it is that she's felt burned too many times by getting her hopes up about a cure that turns out not to work out, and so she has mostly stopped reading this type of news article and has tried to think of it as little as possible. That said, she is in close contact with doctors who are helping her manage her diabetes (obviously something you can't ignore with that particular diagnosis), and so if something truly proven to work does come onto the market, she will be made aware of it by her medical team. I would make sure you are in touch with specialists for your particular disease so that they will let you know if/when one of these cures pans out (and in general make sure you're following their recommendations, if any), but I think it is fine to ignore otherwise if it's not making you feel good to keep reading about it.
posted by rainbowbrite at 10:23 AM on March 1, 2016
posted by rainbowbrite at 10:23 AM on March 1, 2016
I treat "Research breakthrough X" type announcements with the same kind of interest I would learning that Mars has surface water or that we have learned something more about the inner workings of some distant galaxy. This is a cool scientific breakthrough, potentially of interest to mankind's future and maybe even to my great-great-...-great grandchildren or whatever. But I myself will never, no way, no possibility drink that water or visit the galaxy. The water is there and the galaxy is there, but they are separate from me. Despite the lack of direct personal applicability, the discovery itself is nevertheless cool and interesting. Science!
That is exactly how I treat & consider various medical research and breakthroughs related to my own health conditions. I am personally interested in this research and this subject because I personally have this condition, and I think it would be great if humanity could reduce the effects of it or even cure it some day. But (after more than 30 years of reading things like this, and coming to terms with, realistically how long it takes to bring a basic medical discovery from first successful lab result to useful human medicine - and also how low the success rate in completing that process is) I also read them with absolutely ZERO expectation that any such "breakthrough" is going to affect me personally.
(Note that every such result is hailed in the media as a "breakthrough" and "potential cure". That is how the media talks and how they work. Just replace those words in your head with "interesting and slightly unexpected result" and "might result in a successful treatment after 30-50 more years of research and in consideration of the 99.9999% failure rate of similarly promising results in the past but regardless of that is adding some slight amount to the sum of human knowledge about health and biology." )
If, perchance, one such breakthrough actually does benefit me some day, then I prefer to view that as a pleasant and quite unexpected surprise. Rather than viewing each and every breakthrough as a potential lifesaver and then being bitterly disappointed 99.9999% of the time.
FWIW, in my case exactly 0 of the amazing breakthroughs has ever come to fruition, so far as I know. But interestingly, treatment and outcome of my condition has improved quite dramatically in the past 30-50 years just because of general improvement in the overall healthcare system and growing consensus about how to array already-existing drugs and treatments to manage the condition in the best possible way.
Just for example, advances in drugs that treat high blood pressure have helped people with my condition quite a lot--even though that is not the first or maybe even the tenth thing you would think about. Note that these things have happened in a gradual and long-term way. There has never been and perhaps never will be a CURE!!!!1!! for us to get all excited about. But if you look at survival rates over the past 30-50 years, they have gone up a long ways. This type of thing is true of a lot of conditions.
So, there is a way to be modestly optimistic about your own individual future and the long-term future of humanity without feeling obligated to jump aboard the roller coaster of "cure! yes! no . . . hopes dashed! wait, another cure! yes!! no . . . dashed again!!! etc"
Best wishes and hope this line of thinking helps a little bit in your case.
posted by flug at 12:41 PM on March 1, 2016 [2 favorites]
That is exactly how I treat & consider various medical research and breakthroughs related to my own health conditions. I am personally interested in this research and this subject because I personally have this condition, and I think it would be great if humanity could reduce the effects of it or even cure it some day. But (after more than 30 years of reading things like this, and coming to terms with, realistically how long it takes to bring a basic medical discovery from first successful lab result to useful human medicine - and also how low the success rate in completing that process is) I also read them with absolutely ZERO expectation that any such "breakthrough" is going to affect me personally.
(Note that every such result is hailed in the media as a "breakthrough" and "potential cure". That is how the media talks and how they work. Just replace those words in your head with "interesting and slightly unexpected result" and "might result in a successful treatment after 30-50 more years of research and in consideration of the 99.9999% failure rate of similarly promising results in the past but regardless of that is adding some slight amount to the sum of human knowledge about health and biology." )
If, perchance, one such breakthrough actually does benefit me some day, then I prefer to view that as a pleasant and quite unexpected surprise. Rather than viewing each and every breakthrough as a potential lifesaver and then being bitterly disappointed 99.9999% of the time.
FWIW, in my case exactly 0 of the amazing breakthroughs has ever come to fruition, so far as I know. But interestingly, treatment and outcome of my condition has improved quite dramatically in the past 30-50 years just because of general improvement in the overall healthcare system and growing consensus about how to array already-existing drugs and treatments to manage the condition in the best possible way.
Just for example, advances in drugs that treat high blood pressure have helped people with my condition quite a lot--even though that is not the first or maybe even the tenth thing you would think about. Note that these things have happened in a gradual and long-term way. There has never been and perhaps never will be a CURE!!!!1!! for us to get all excited about. But if you look at survival rates over the past 30-50 years, they have gone up a long ways. This type of thing is true of a lot of conditions.
So, there is a way to be modestly optimistic about your own individual future and the long-term future of humanity without feeling obligated to jump aboard the roller coaster of "cure! yes! no . . . hopes dashed! wait, another cure! yes!! no . . . dashed again!!! etc"
Best wishes and hope this line of thinking helps a little bit in your case.
posted by flug at 12:41 PM on March 1, 2016 [2 favorites]
I have a genetic disorder and so does my oldest son. Anecdata and opinion follow:
Most online discussion lists or support groups are shitshows. If you think MetaFilter gets all het up at times, you ain't seen nothing. This place is calm, cool and collected 24/7 compared to your typical chronic illness list.
Throwing a bunch of scared, miserable people together to support each other in such environments is almost always like asking a bunch of neurologically impaired people with infected, blistered toes to walk together: Odds are high that lots of toes will get stepped on and the owners of those toes will not be miffed. They will be enraged.
Nonetheless, most people I have been Internet-acquainted with who did better than average with their condition did keep up with news related to it. You probably do not want to read mainstream news about your condition. That is almost always some version of that song that talks about the news as being about dirty laundry. They want drama. They want excitement. Facts are less important than emotional hype.
If you can find a good newsletter you like or if you are willing to get a subscription to an online service that publishes the actual medical studies, that might be helpful. Do not just read the summaries that you can get for free online. Read the actual studies or skip it altogether.
I used to be on a support list where they often posted and discussed those summaries (there is a term for such summaries, but it escapes me at the moment). I was uneasy with that, but I tried to keep up. Then, a PhD chemist and published author kindly gave me some of his time. During our phone discussion, he told me to not read the summaries because they often say something very different from the actual study, even sometimes the exact opposite. So, I happily stopped reading the summaries. That was kind of what I had suspected all along.
I sometimes enjoy medical discussions and genetics discussions on MetFilter or Hacker News. Not always, but sometimes they contain excellent information with meaty discussion that isn't overly biased and is neither too update nor too downbeat.
If you can find folks you like on Twitter, I am finding the constraints of 140 characters helps keep things relatively light -- I mean "not weighty", I don't mean "lighthearted" -- and it is easy to dip in and out.
You might go looking for something with a big picture overview (Like Wikipedia or some "this disease foundation" site) to give you an idea of solid progress. Solid progress is not captured by the headlines screaming about the latest miracle cure that is not yet fully vetted, so it probably won't live up to the hype anyway. Instead, it is captured in aggregate stats, such as current average life expectancy versus what it was 10, 20 or 50 years ago.
There is no need to let go of your half glass empty security blanket for the blurbs about miracle cures. Feel free to watch movies or TV shows that mock that. "I am legend" with Will Smith starts with a pronouncement of a miracle cure for cancer and turns into a zombie apocalypse. Movies like "I am legend" sort of sum up the "miracle cures" stuff fairly well. New drug therapies can enhance quality of life, but I have yet to hear of anything where you pop x pill and are all better for eternity now.
Actual reality: These kinds of conditions are generally a case of "slow and steady wins the race." So, if you can find a news source about diet, exercise and lifestyle choices that make a difference, that would be a good thing . Everyone I ever knew who did well with their horrifying condition made a good diet, customized to their condition, a high priority.
This typically gets overlooked by mainstream media. They generally are focused on drug discoveries and new surgeries, not diet, exercise, etc. Never mind that study after study after study shows that diet is a factor in all kinds of serious conditions, it still tends to not get taken seriously as a first line of defense.
I don't know if I have covered everything, but I seem all talked out and I have other things to do.
Best of luck.
PS: As general advice, be skeptical but not closed-minded. There is a big difference between "That sounds unlikely. I think it is probably hype. I want more solid proof." and "LALALA NOT LISTENING!"
posted by Michele in California at 12:50 PM on March 1, 2016
Most online discussion lists or support groups are shitshows. If you think MetaFilter gets all het up at times, you ain't seen nothing. This place is calm, cool and collected 24/7 compared to your typical chronic illness list.
Throwing a bunch of scared, miserable people together to support each other in such environments is almost always like asking a bunch of neurologically impaired people with infected, blistered toes to walk together: Odds are high that lots of toes will get stepped on and the owners of those toes will not be miffed. They will be enraged.
Nonetheless, most people I have been Internet-acquainted with who did better than average with their condition did keep up with news related to it. You probably do not want to read mainstream news about your condition. That is almost always some version of that song that talks about the news as being about dirty laundry. They want drama. They want excitement. Facts are less important than emotional hype.
If you can find a good newsletter you like or if you are willing to get a subscription to an online service that publishes the actual medical studies, that might be helpful. Do not just read the summaries that you can get for free online. Read the actual studies or skip it altogether.
I used to be on a support list where they often posted and discussed those summaries (there is a term for such summaries, but it escapes me at the moment). I was uneasy with that, but I tried to keep up. Then, a PhD chemist and published author kindly gave me some of his time. During our phone discussion, he told me to not read the summaries because they often say something very different from the actual study, even sometimes the exact opposite. So, I happily stopped reading the summaries. That was kind of what I had suspected all along.
I sometimes enjoy medical discussions and genetics discussions on MetFilter or Hacker News. Not always, but sometimes they contain excellent information with meaty discussion that isn't overly biased and is neither too update nor too downbeat.
If you can find folks you like on Twitter, I am finding the constraints of 140 characters helps keep things relatively light -- I mean "not weighty", I don't mean "lighthearted" -- and it is easy to dip in and out.
You might go looking for something with a big picture overview (Like Wikipedia or some "this disease foundation" site) to give you an idea of solid progress. Solid progress is not captured by the headlines screaming about the latest miracle cure that is not yet fully vetted, so it probably won't live up to the hype anyway. Instead, it is captured in aggregate stats, such as current average life expectancy versus what it was 10, 20 or 50 years ago.
There is no need to let go of your half glass empty security blanket for the blurbs about miracle cures. Feel free to watch movies or TV shows that mock that. "I am legend" with Will Smith starts with a pronouncement of a miracle cure for cancer and turns into a zombie apocalypse. Movies like "I am legend" sort of sum up the "miracle cures" stuff fairly well. New drug therapies can enhance quality of life, but I have yet to hear of anything where you pop x pill and are all better for eternity now.
Actual reality: These kinds of conditions are generally a case of "slow and steady wins the race." So, if you can find a news source about diet, exercise and lifestyle choices that make a difference, that would be a good thing . Everyone I ever knew who did well with their horrifying condition made a good diet, customized to their condition, a high priority.
This typically gets overlooked by mainstream media. They generally are focused on drug discoveries and new surgeries, not diet, exercise, etc. Never mind that study after study after study shows that diet is a factor in all kinds of serious conditions, it still tends to not get taken seriously as a first line of defense.
I don't know if I have covered everything, but I seem all talked out and I have other things to do.
Best of luck.
PS: As general advice, be skeptical but not closed-minded. There is a big difference between "That sounds unlikely. I think it is probably hype. I want more solid proof." and "LALALA NOT LISTENING!"
posted by Michele in California at 12:50 PM on March 1, 2016
Also, on a practical note, you could make a point to make your annual donation of $50, $100, $1000, or whatever fits your budget and fits within the spectrum and amounts of other charitable donations you make, to the charity that supports research in your condition and/or supports people & families with the condition and/or advocates for people with your condition.
With that, you have done the actual constructive/helpful thing you can do to help move medical research forward in the area. Maybe once or twice a year write your member of Congress or whatever your advocacy organization suggests. Meanwhile, disengage from the daily tit-for-tat about progress and disappointment. You've done what you reasonably can to help; now you can disengage and move forward with living your life.
posted by flug at 12:56 PM on March 1, 2016
With that, you have done the actual constructive/helpful thing you can do to help move medical research forward in the area. Maybe once or twice a year write your member of Congress or whatever your advocacy organization suggests. Meanwhile, disengage from the daily tit-for-tat about progress and disappointment. You've done what you reasonably can to help; now you can disengage and move forward with living your life.
posted by flug at 12:56 PM on March 1, 2016
This thread is closed to new comments.
I would hope that you are at least in periodic contact with a medical professional with some kind of specialization in the general area of concern, and it's actually their job to know when these things are relevant to your case personally. Check in with them every so often to find out if there's anything they think you should know/do.
posted by Lyn Never at 8:00 AM on March 1, 2016