Got a Bad Diagnosis? Talk to Someone Who Has Been Through It

Got a Bad Diagnosis? Talk to Someone Who Has Been Through It

when Jody of Asahina learned she had breast cancer at age 29 in 2016 she got more than standard medical care she was connected with Noel Peters a former patient who serves as a mentor to new ones and I'm quoting her here Noel helped me tremendously mrs. F a zucchini said in an interview every time I had a question about my response to treatment whether it was normal she had answers from her own experience in an ideal world when we are faced with the new health problem a clinician is available to sit down and address all our questions and anxieties about the condition and its treatment this ideal is rarely met in the United States Health System more typically we're rushed through doctor visits that fly by too quickly for us to gather our thoughts other patients can help they have or have had your condition as well as your anxieties and questions and they've found a path through their journeys can be informative and helpful and can also help prepare you for the next session with a doctor that's the topic of this week's healthcare triage there's a lot about the patient experience that doctors and nurses cannot convey because they haven't gone through it miss Peter said you can get a much better sense of what it means to be a patient from another patient patients know this from experience I've talked and written extensively about my ulcerative colitis and mental health austan frat two co-wrote the column from which this episode was adapted has written about his insomnia minor heart condition and sleep apnea at first we both sought lots of advice and not just from doctors in turn once we gained experience we shared what worked and didn't with others sharing health stories and learning from one another in an unpaid way like in-person mentorship online chats or phone calls is known as peer health advice or peer to peer health care the Internet has made finding other people with your health problem easier for example the database of patients experiences is an international collection of videos of patients sharing their experiences about various health conditions this kind of sharing is similar to something humans have always done when we have problems we discuss them with others we routinely get advice about where to get our car fixed and which plumber to call for example one four people receive information or counsel from someone with a similar condition few of us can read everything about our condition those who've gone before us can help sift through the mountain of information for what's most useful studies of diabetes management found that those who participated in peer-to-peer health care lowered their blood sugar level more than those who did it studies of the effect appear to peer healthcare in a variety of other areas many of them randomized controlled trials show the same other people's stories can adjust into treatment in response to Austin's blogging about sleep apnea several of his colleagues admitted to having or suspecting they had the condition but not treating it they said his blogging is encouragement to change that likewise when I described my frustrations with the health care system in refilling my medications every three months even in an episode on healthcare triage it was cathartic and viewers with the same trouble said they felt heard when Austin wrote about sleep apnea he received responses with helpful information that changed his mind about which of two reasonable therapies to try first it even helps when it's part of research when I conducted focus groups of patients and parents with chronic conditions like diabetes many participants reported that the biggest benefit to them was participating sharing their stories and making connections with others going through the same issues unfortunately peer-to-peer health care has potential downsides peer advice shouldn't be confused with using the internet for diagnosis a practice that studies have shown is not very accurate but online forms for specific conditions are another matter one study found that only a few out of nearly 5,000 posts on an online breast cancer forum were false peer sharing isn't always helpful because people can respond differently to treatment what worked for us may not work for you and vice-versa additionally in some cases peer sharing can skew perspectives and dangerous ways misinformation wrapped up in a personal health care story can have a huge negative impact for all of us for example stories about how vaccines are associated with harm they'll potentially true in rare instances do not imply that vaccines cause more harm than good in fact as you all know vaccines cause much much much more good than arm a 2010 national survey of adults by the Pew Research Center backs this up people prefer to see professionals for an accurate medical diagnosis information about prescription drugs and information about alternative treatments but they turn to non-professionals for supporter advice on an everyday health problem users of patients like me an online patient community also reported that engaging with other patients on the site improved their understanding of their conditions it's also possible to people could use the information you write about to discriminate against you or treat you badly of course any time you put something online you risk encountering trolls and unkind people one thing that isn't the risk that many might think is underwriting or not being able to get health care coverage because of pre-existing conditions that's largely gone now because of the Affordable Care Act but even when it existed or if when it does again you're not going to hide your health conditions from an insurer you usually have to provide the insurer with access to your medical records eventually they'll find the truth whether you've written about our online or not a new diagnosis or big change in health can be frightening in such circumstances we often have a lot of questions but we may not know the range of possibilities for treatment or where to start the health system can be helpful but too often it isn't a little help from friends can go a long way do you like the show always helps if you like or subscribe right down there and another good way for you to support the show is a subscription service north adriano where you the viewer can directly support on anything you like like $1 a month more if you like but if you don't want to totally fine as well go to scare trash to see how you can help we'd especially like to thank our Research Associates Josef it's crafty geek and Jonathan Dunn and of course our surgeon Admiral Sam as always go to HT merch com to pick up good healthcare triage Mart – my book – bad through Bible still on Salem schools you

32 thoughts on “Got a Bad Diagnosis? Talk to Someone Who Has Been Through It”

  1. This is actually the first time I have heard about “peer-to-peer health care.” I think that it is a very interesting idea and is probably very helpful for many people to hear that somebody else out there is going through the same disease. The website you mention, DIPEx international, which facilitates peer-to-peer healthcare may be helpful for some people as it opens them up to information they would normally not have due to confidentiality in health care, although, I do see a few significant flaws with this idea. Some readers may trust the advice given to the point where they consider it a diagnosis. This is not appropriate chiefly because the health of an individual should be treated uniquely due to how the body will react with at least some variance to the same treatment given to another. Symptoms may match those of another on the website, but the reader could possibly have an underlying disease that needs to be diagnosed and treated by a professionally trained physician. I have the fear that peer to peer health care will turn people more and more to the internet and less to the doctors that can give them the best care. Physicians should be the primary source for healthcare information and other internet sources should be secondary due to the individuality of each person.

  2. Oh yeah peer groups can be helpful with providing advice and emotional support. It's been helpful for me. I agree, misinformation can be spread quite easily especially when people are highly skeptical about professionals.

  3. I am a neuropharmacologist. It gives me great pleasure to perform detailed biomedical research for people on their diagnoses and conditions so they will have good questions to ask their doctors as well as share with friends, colleagues, and communities.

  4. Why the hell am i getting ads for magic crystal medicine bullshit on a healthcare triage video of all places

  5. Can you please do a episode on Complex Pain Syndrome or Chronic Pain? I was recently diagnosed and theirs just not enough talk about the condition.

  6. My dad was diagnosed with sarcoidosis in his early thirties and being able to chat online with people who were also diagnosed with the disorder was very helpful for him. A lot of those people were at the end stage of their disease, and it was helpful for him to see that up until that point a lot of them slides with a very high quality of life. Even though he has gout and he could lose a few pounds, his disease hasn't stopped him from being able to have the job he wants and to be able to do the daily things he wants to do. He has recently made some Life Choices that are helping with his disease process such as quitting smoking.

  7. How do you think addressing the push many politicians have sought after to make Affordable Care Act less accessible since it's inception, and the continual desire to push back against medical care for all by US Government officials?

  8. well I figured out why I had chest pain though the internet though I did read many ACTUAL research papers before I actually tried what might help against it and its been 1 year so far no chest pain. also it was largely my own fault. bad life habits.

  9. Hurrah! For Support Groups! 👐
    It's amazing that some hospitals have come across multiple cases of the same rare condition but not asked the patients if they would like to meet fellow sufferers. A simple and cost efficient treatment which is so undervalued is Support Groups.

  10. I prefer the in person method to gain advice, I had to leave the online forums and Facebook groups for my chronic condition as it was a place full of hate and anger that began shaping how I thought too. I left those groups and my mental health is MUCH better!!

  11. Great episode as usual!

    I have to admit I really do miss the old intro and graphics. I feel like the new ones are nice but the old ones felt more homey.

  12. People can help or they can hurt. Conspiracy like that of vaccine injury causes autism, use of alternative who meds like Jilly Juice, and such things of woo hurt. Though there is good in learning to stay away from woo by chatting as well.

  13. I am not a good example for this. My splenectomy and chemo has been a breeze. With the time I have been able to take off of the soul sucking job I have to have health insurance it has been an overall positive experience.

  14. Talking is overrated. A babybummers thing.

    Hard on the thyroid.

    Id rather read, great for the limbic system

  15. Well in our case my SO was diagnosed with diabetes. Reading the manual for the meter is alright – but vids on YouTube helped me understand how to check his blood sugar.

  16. Love this episode. I think this is a great asset not only to the people getting the information but also to those giving. Just lovely.
    And yes, it can be misused, we will have to deal with that is it come.
    What are the major sites for these services?

  17. Unfortunately many around me are full of non-evidence-based medicine. Not sure if that's still helpful for someone who has the same disease.

  18. God damn right.
    Unfortunately, you used the two most well known health problems known to man; diabetes and breast cancer.
    Those two need to barred from any form of advertising or ‘awareness’ for ten years as a penalty. They went too far.
    Ask absolutely any person on the street if they know about those two conditions and damn right they’ll give you detailed information and a list of relatives and friends who have it.
    Breast cancer receives the biggest slice of pie in terms of funding and awareness yet its not equal to the proportion who suffer…
    ask anyone about NETs who or other rare disease and they’ll look at you like a fool.
    Enough with breast cancer awareness! Give the spotlight to the lesser known but equally fucked up diseases!
    Fuck breast cancer awareness!
    Everybody knows!

    I suffer from NETs with active carcinoid syndrome and severe serotonin syndrome which has caused massive heart failure and resulted in years of chemo, experimental radio, hormone therapies, open heart surgeries and bowel reductions.
    But if I tell anyone what I got, they no fucking idea. Our support groups are pathetic and full of old people. No one knows shit. Not even doctors, I was used as a guinea pig they were studying off me like I was a cursed golden geese. There’s not enough people in the world who I can even contact who has what I have in the unique sequence I have it. Having NETs is one thing… the rest on top is one in a billion level shit.

  19. Good luck getting that, especially when it comes to mental health in America. But hey, let's keep pretending the system works…

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