As a person who has Cystic Fibrosis, CF effects everyone who has it differently. While what she has done is great for her, its not just a simple mind over matter. The amount of CFers who have passed in their teens and 20s, it wasnt because they didnt push themselves or didnt try as hard as they could, its because CF effects everyone differently. For some its more pancreatic and for others its more lungs, then their are those, like me, who have a mix of both and how badly it effects these areas can be more and less harsh based on their mutations and their genetics.
This is very important to keep in mind for people with any sort of illnesses that keep accusing others of not surviving/struggling more for not doing this or that to survive...its like, yes you survived but it doesnt necessarily mean it was because of what you did (unless its a scientifically proven method of prolonging ones life)
Yes, exactly! There are even different genes involved. I found out I was a carrier for the most common gene when I was pregnant. I was very lucky that I happened to choose a mate who was CF negative. I’ve taken care of babies through teens with CF as an RN, and I have so much respect for people fighting this disease.
As someone with Cystic fibrosis, who lives in Australia, with public healthcare, and "Positive thinking" and growing up wealthy, take it from my perspective- I'm 35 and needed a liver transplant at 15. Then a double lung transplant at 23. All the positive things and money in the world and CF still destroyed my body, by the time i was 25. I'm really over these CF patients that just believe that because they did X, Y, Z,, it's how it turned out for them, doesn't mean it goes well for other CF patients.
I feel like the message of this podcast isn't just about positive thinking. But using your mindset to live the most active and fulfilled life. Sadly, positive thinking alone doesn't give you that. Action is needed.
@@ivands16 don’t minimize their struggle. If they could will themself healthy they would have. Given the little they shared they have gone through an insane amount of pain and suffering. I think people who act like all it takes is a positive mindset are naive and dismissive. Unless you have lived their life you don’t know
@@A---ti3zz nobody is talking about willing oneself healthy. They're talking about making the most of the situation that you're in, which looks different for different people.
While i agree with you that she's a lot luckier and probably has a milder case of it than you, there is no harm in giving the average CF patient more hope. A positive mindset and less stress are good for general health.
My husband has CF double lung transplant 5 years ago and is turning 45 in 13 days. It has been a rough ride for him at times and I am grateful every extra day we have together. He is only here no just because he is determined to live life, the access to modern medicine and the type of CF he has along with his sense of dark humour and personality traits that help him everyday. He doesn’t talk about it mouth but he has lost countless of friends to CF which I know has taken its toll on him. He is grateful for every day and lives his life his own way.
One of my classmates from elementary school had CF. She was the most energetic and all over the place kid I'd ever known at that time. She trained and was very active all her teen years and a good portion of her 20's, but then the toll of CF really hit. She passed almost 2 years ago at 32/33, leaving behind a child and husband. She truly did live her life to the fullest as much as was possible for her, but you could so clearly see the toll it took on her body. High spirit all the way, but when the transplant failed, she knew that was it. We were never really friends (for different reasons), but I admired her for her outlook on life and how she managed it all, despite knowing she had a very limited amount of years left.
I work in clinical research for CF and it's amazing seeing how far we've come in medicine. I'm always very happy to see how people are beginning to live a life
WOW! how inspiring! I had a friend who died because of CF. He was too tired and didn't want to be intubated anymore , he was tired of the pain and had no quality of life. ( he had already been intubated 8 times prior). while it's great for her that she was able to develop a good mindset about her life and health, I can't imagine how difficult it would be to push thriugh when it feels like you've been slammed by a truck...
You are so patient and kind. I love how you treat people during your interviews. You let them say their piece and you are a great listener. Your kindness and humility are the reason I watch your videos. God bless ❤
My friend's (he was born in the 1970s) parents were told he'd die by age 1, but he survived. The doctors said he wouldn't make it to age 5. He did. Then 10, 16, etc. The whole time, the parents didn't work too hard to teach him life skills because they didn't expect him to get to adulthood. He had a harder time figuring out how to work, pay bills, etc. Maybe the mind-over-matter attitude (or at least a positive outlook) in the PARENTS could have improved my friend's quality of life from the non-medical struggles. In the end, he got to 42 years old before finally deciding he'd had enough between the lung issues, digestive issues, MRSA, and overall misery that each breath caused.
I had 2 aunts who died from this horrible disease. Things were different in the 60’s, 90’s and even now. I’m so glad that medicine has come such a long way for those living with this!
It’s basically just luck. For some people tripping is fatal. For others they live with a terminal illness for far longer than they’re supposed to. Stephen hawking shouldn’t have lived as long as he did, but he’s the outlier, the exception. These lucky people shouldn’t advocate for their lifestyle in people with the same illness as them because frankly speaking it’s irresponsible for them to tell others that they just need to mind over matter their situation.
I think I understand your point of view, but I’d like to share a different perspective. I have cystic fibrosis, and for many years, I’ve fought incredibly hard to stay as healthy as possible. My main driving force has always been my love for life and my curiosity about so many different things. I want to make the most of every moment, you know? If I hadn’t given it my all-training hard even when it felt like I was starting from scratch after every cold, flu, pneumonia, or even things like pneumothorax-I wouldn’t be here today. I’ve lived longer than I was expected to, and I truly believe my mindset has played a big role in that. :) Of course, I recognize that luck also plays a part, and some people face even tougher challenges. But for me, choosing to fight and embrace life has made a huge difference. So yes, I think advocating a lifestyle focusing on the importance of mental resilience, curiosity, positivity and a love for life is important. I don't think it ever harms, only helps. An excellent advocate who just refused to let CF break her spirit and love for life was Claire Wineland and many, many people have her to thank for helping them see life with CF differently.
For anyone else having an issue with this one, you're sensing inspiration p*rn and condescension. Yes, mindset is powerful, but it's not everything. And there is no shame in achieving less than someone else; as long as you're content with what you're doing.
I lost my cousin with CF at 19 years old, her "living life to the fullest" though became drugs which is what took her. My family still says it was her CF that took her because it hurt too much
For your sake, I'd interpret it as them living and dying on their own terms. CF must be such a difficult and unpleasant way to live. Sounds like they found an escape, both temporarily and permanently. Truly sorry for your loss.
As someone with CF, I can say that CF brings alot of emotional trauma that people often hide, and cope with in other ways. I have mental health issues that are stemmed from Cystic fibrosis.
I meant to only watch the intro cause I was in the middle of mopping my floors, but I ended up listening to the whole thing. What an amazing person she is. I hope to bring all that you guys talked about with me for my days and years to come. Really great episode and conversation 🌻 thanks Mike and Sophie
were learning about cystic fibrosis in health and social, an op subject for last yr of school, and learning about it makes me realize how hard it acctualy is for people to live with it. im proud of the people who are managing it and sorry to the ones who cant :(
My best friend has spinal muscular atrophy (SMA). She was so young when it became evident, her life expectancy was 2 years old. She is now 37 years old and, thank heavens for Spinraza.
I think I need to adopt her mentality. I have many chronic conditions, and I always fall to the mindset of "I can't." And then I see Sophie, who's basically always on death's door, pushing her limits. I think my biggest issue is that I should have been hitting certain milestones by now. When my sister was 26, she was already engaged and owned a house. Well, she still owns it. I need to find some sort of balance between the two mentalities.
as a queer “late bloomer” (hate that term), all those milestones people talk about and when to reach them are BS. it’s for a very specific type of person who is straight, cis, able bodied, and middle class or above. i struggled for a long time with thinking “im X years old i should’ve done Y by now” too but my therapist helped me realize that life is not about meeting milestones and moving along a specific timeline. in my mind it makes life seem like a checklist to complete, rather than an experience. hope my advice helps at all, best of luck to you
@tastyjerry I know. It's something I'm working through in therapy, too. (I'm also, I guess you can say, strongly demisexual. Like, I'm not desiring sex, and I'm waiting to find someone I can trust, first and foremost. I guess kinda bordering on ace, but I digress.)
Same I'm right here with you. I'm currently unable to get access to the meds that give me more energy and quality of life, and I'm unsure if I'll be able to, and it's honestly hard to have the mindset of I can and will, when my own body frequently proves I can't midtry... Idk. I'm here with you!
All I’m hearing is that wealth improves quality of life no matter the diagnosis. I haven’t finished the video yet but it would be a disservice to gloss over this fact and focus on just her “mentality” being the key. It is and was wealth.
yes the replier above either isnt a doctor who observes her patients well and doesnt understand that there are plenty of variables to diseases. and people in general want to live. except for those very few individuals who dont. or have severe mental disabilities. which are not the general population. anyway its not use to argue with people who see things with just one lense. but maybe if they read the comments below will actually realize it. and yes the medical professionals in the usa are going down at this point. the few that are so good are very expensive and lots of money is needed. for the average person it isnt attainable.
@tastyjerry First of all she, like myself is British so the NHS takes care of ALL of our medical expenses so no medical bills to worry about and second she actually mentions "her clients" so it seems she does have a job and is probably self employed.
Having a purpose greater than yourself, having a strong sense of identity, and being okay trying something and failing are all things that build confidence
Strong woman. Very good for her. Thank you for sharing your story and your mindset! You’ve created a beautiful life for yourself despite the challenges thrown at you ✊🏾
I hope Mike does another Survivor injuries & medical evacuations video at some point since he didn't react to some iconic ones & there have been more since that video was uploaded.
We have people with CF living into their 40s and having children. Which is pretty wild compared to just a decade or two ago. I read some medical journals on it for an L&D rotation and didn't even realize they could survive a pregnancy, wild stuff.
Thank you for this video! As my name suggests, I have CF as well. I am in admiration at The 36 Marathons in such a Short amount of time. I appreciate the ability you have to spread awareness to this little known but widely suffered disease.
She looked death in the eye and said, "I'm kinda busy right now." Inspiring to hear that kind of enthusiasm and determination in such a defeatist-centric world.
Fantastic episode! It led me to adding more quotes to my home office to keep focused and motivated 😊 Appreciated the perspectives (and reminders) on understanding risks, controlled suffering, the power of hope, and how doing hard things makes life easier.
This was an awesome and amazing podcast. I love hearing other people's health journeys. Even though I can't do some things anymore, I need that reminder to keep going, and that it's going to be ok. So inspiring. Thank you.
🙈watching this, as a runner, from my comfort zone that i rapidly sank into after experiencing too much stress that caused me to eventually break under pressure, gradually stop running and gain a lot of weight is so confusing..like my motivation to do anything vanished.. i've run daily for years and now i can barely make myself run once a week i feel like i've lost myself..and there she is 🌻🙈eerie..watching and listening her as if looking in the mirror and yet..my soul left me. i feel nothing and no words help me because all i want is to eat, watch movies, do nothing, sleep..i feel like i failed even tho technically i still have my muscles and all that's changed is weight (+10kg) but my brain just says "i don't want to and i see no reason to do it now. i want to eat persimmons, sweet creamy cottage cheese, watch series and sleep".. 🙈i used to wake up at 5am every day workout then run for years..now..nothing..i don't even want to wake up.. anyway.. she's..thank you for inviting her 💖🌻🙈i hope i'll get back and be strong again like her🤝💕🤗
You might be experiencing the symptoms of some kind of mental health condition. There might be treatment options available. I would maybe talk to your PCP about getting a psych eval.
@@tamberjune trying my best🙈did wake up at5am today, worked out a bit and ran a little.. i know the reason tho.. starting a new relationship(after being single and happy for years)+several checkup appointments bloodwork and such spanned over two months+a very restrictive diet prescribed by my doc+daily long distance running(20km+)+lack of sleep+changing seasons+breaking up TLDR stress🙈thank you for your kind words💖🌻 i'll keep trying to get back one day at a time✨
Hello Dr. Mike!! I've been following your channel for 4 years now, and I'm always amazed by your ability to make complex topics so easy to understand. Your passion for medicine is truly inspiring! I've learned so much from your videos, and they've helped me in biology.. Thank you for sharing your knowledge with the world. Your videos are not only informative but also incredibly entertaining. Your humor and personality make learning fun! Once again, thank you so much Dr. Mike ❤❤ Sending love from India 😄😄
Honestly, I know it’s a more in-depth explanation, but explaining the math behind life expectancy for conditions might help. Everyone says the doc told me I’ll be dead by such and such age, when it’s really 50% of people with your condition are dead by then, or 90% of people with your condition are dead by then. It gives you the reality of your situation while also allowing for hope of beating the odds.
Good for her but is it confidence or just late manifestation of symptoms? Let's not assume a positive attitude can change physiology. I hope she enjoys life no matter what.
She is extraordinary, but she is coming from a place of great privilege. "Most people just want to make as much money as they can, but whats the use of millions in the bank if you're not living". This is quite out of touch with the vast majority of the general public. People do WANT to live. We are not hyperfocusong on money to simply get millions in the bank. We are losing precious time "living" while we work to barely get by. It is not as simple as just waking up and realizing we need to LIVE when you're 3 missed mortgage payments away from being out on the street. Like us, she is a product of her environment so I dont blame her, but she is a bit ignorant and naiive in a lot of ways.
Truly inspiring! Please keep doing content like this because we all need be reminded of what is possible even when someone might have the mindset that one can’t do something (meaning the naysayers in society who tend to think that just because someone has a chronic and/or terminal illness they can’t do certain things when in fact they can and quite well speaking from personal experience here and in no way I’m I trying to undermine the fact that there are different factors that play a role in the overall success of an outcome in terms of treatment, especially when taking in account one’s overall health in relation to severity/type and access to care) due to a health condition/challenge that would otherwise create a roadblock and not allow someone to lead a meaningful life. As always, thank you, Dr. Mike for all you do and for continuing to help change the conversation for those of us who deal with various health challenges. I say this as someone who has dealt with the daily struggles that stem from having been diagnosed with cerebral palsy at birth. That being said, I am well into the 37th year of my journey, and have never found a challenge that I haven’t been willing to overcome. Cheers to all the warriors out there that have continued to defy the odds. You got this! 💪🏼 💚
i do think its important to have a postive attitude and it does help in regards to how we view things in life. but just a positive attitude isnt the answer to disease all the time. there are plenty of variables to if we succumb to disease and if we live through it. like access to good doctors, family support, god runs the world and if its destined for someone live nothing stops it from happening including severe deadly diseases. as we have all witnessed. and some can fall and die because of the type of outcome. clearly we need positivity but its not the only thing. lets have a broad picture and not look at things in black and white.
Dr. Mike: just wonder if you would research and do an episode on resident burnout? This topic has drawn a lot of attention on social media recently, and impacting quite negatively. Maybe interview Dr. Sinsky of AMA, Dr. Tait Shanafelt of Stanford, or Dr. Jake Goodman, just a few names, to bring a realistic and positive influence on social media.
The only thing that I believe in, despite being a Doctor myself, is willpower to defeat the condition you have. Nothing can be stronger than your positivity, and the sheer will that you harbor to defeat your illness. Even The Fates that root against you will have to bow down to let you win, and Sophie Grace Holmes, you are a clear example of that. Thanks, Doctor Mike, for such a wonderful and inspiring episode, that riled me up to do better too!
everyone has a will to live. and i know very strong willed people who had deadly disease and succumbed to their deadly disease because not everything has a cure. we dont run the world. g-d runs it. and i suggest you look around at whats going on. your patients want to live. and their willpower is stronger then you think. if you havent seen it. maybe you havent observed them well. or dont understand that the nature of humans is to want to live.
Had a childhood friend die of CF at the age of 40. At that time, that was pretty much an incredible feat to survive that long. It's just a shame that despite having the human genome CRISPR technology, we can't use it to just fix this. (didn't have it then) What's really irritating is this woman, like so many others, has a fantastic will to live - and not just survive. And reproduction has got to be a terrifying reality. Her parents have got to be incredible people for her to have this attitude.
I work with elementary students every day. One of the hardest things for them is being told they made a mistake...they take it personally; they think they are a bad person because they made a mistake. First lesson: it's not personal. We are going to let you know when you make mistakes so that you can learn and grow.
She's really inspiring, even for me who does not have CF. I enjoyed this interview. But I also know that CF is different for everyone who has it. I don't personally know anyone with it, but I happened to watch a few different RUclipsrs with it. I watched The Frey Life a lot. Mary went through a lot of suffering with her CF. But she was of the mindset that every little moment counts. This was the mindset that her and her husband live by. Eventually, she was able to take Trikafta, and it was like a miracle drug for her. Her and her husband were able to even adopt some kids when it would have been impossible before that drug. And then there was Stephi Lee, whose CF seemed much more mild than Mary Frey's, but she was told she wouldn't live into her 20s so she made every day count. Now she is also on that new med and doing better. Then there was a girl, I forgot her name, but her case was much more severe. She got a double lung transplant but died shortly after the surgery due to a blood clot.
I think when you're born sick and reach a certain age I don't think people expect you to get out and get a job and live a "normal" life. Unless of course that's what the sick person wants.
Thank you for this video. I don't have CF but I have RA, OA, torn meniscus, herniated lumbar disc, and will be 60 in a few weeks. Ran my first marathon (after 8 half marathons and a 25k) earlier this fall. It was definitely mental. The race I ran was two out-and-back loops. At the end of the first it was pouring rain and starting to get really muddy and many people stopped and took the medal for 13.1. I managed to make myself turn around and go back out and finish. If I can do that, what else can I do? My mom had severe osteoporosis. My bones are great. I lift 2-3x a week despite hating it (soooo boring, would rather run!). My biggest challenge is enough sleep, but I'm working on that. I'm absolutely not watching this video at midnight.... :-) Suffice to say, yes, everyone has limits they can't overcome. But if you don't try, you won't know what those limits are.
While it is great she can do endurance/marathons with CF - I know for a fact I can't and I DON"T have CF or asthma (other lung problems). Not a matter of mind over everything - I can barely run a 880 in high school and in reality I was not running the last half lap. I was dead by halfway. I am never going to be able to RUN the 880. My genes, my breathing, just don't work for those things. I am never going to be a star soccer player, football, race car driver - no matter how hard I try or how much I want it to be true. VERY few (I would argue no one) can do anything they want - just mind over matter. Reality is - her body is designed to do well at what she is doing - endurance/marathons.
My brother was born with Cystic Fibrosis. He was told he would die as a teen. He played high school baseball - throughout high school. He went to and graduated college. After collage he played semi pro baseball. Was always athletic. He had his first bout of pneumonia at about 22. He didn’t have pneumonia again until 30. Not until 30 was he continuously sick and in and out of the hospital. He was put on the list for a lung transplant at 32. He had an hospitalization where he had to be put on a ventilator. After that he decided that he would go DNR. He died at 33. The day after his death, his wife received the call that there was a lung available. I wish he hadn’t decided to go DNR. That was 30 years ago.🙁
Hey Dr Mike, can you maybe give me a reason that I eat large portions of food but I still feel hungry when I eat those portions, but when I don’t I feel like I am absolutely full?
She and Doctor Mike definitely speaks for the upper middle-class. It's easy to say "live your life" if you belong to that class. For poor people who take three or four jobs in a day just for subsistence, life is actually work 24/7. For a person from the Global North, we come to the realization that we need to struggle and topple down a social system that does not allow us to live our life before living it the way these speakers are saying
my family has connective tissue disorders. most of us weren't diagnosed till adulthood but even as kids we had some pretty big set backs my brother was told he would be in a wheelchair by the time he was 20. he said NOPE and became a pro skateboarder. my sister was told it was to dangerous to have children, she said NOPE and had 6. i was told i'd never be strong and i said NOPE i took up body building.
As a person who has Cystic Fibrosis, CF effects everyone who has it differently. While what she has done is great for her, its not just a simple mind over matter. The amount of CFers who have passed in their teens and 20s, it wasnt because they didnt push themselves or didnt try as hard as they could, its because CF effects everyone differently. For some its more pancreatic and for others its more lungs, then their are those, like me, who have a mix of both and how badly it effects these areas can be more and less harsh based on their mutations and their genetics.
Plus her parents were clearly very wealthy when she was growing up, and that also makes it REALLY easy to say "just do whatever you want!"
This is very important to keep in mind for people with any sort of illnesses that keep accusing others of not surviving/struggling more for not doing this or that to survive...its like, yes you survived but it doesnt necessarily mean it was because of what you did (unless its a scientifically proven method of prolonging ones life)
Yeah it seems that being able to afford medical bills tends to affect peoples ability to cope with illness, who knew
Yes, exactly! There are even different genes involved. I found out I was a carrier for the most common gene when I was pregnant. I was very lucky that I happened to choose a mate who was CF negative. I’ve taken care of babies through teens with CF as an RN, and I have so much respect for people fighting this disease.
glad someone pointed this out
As someone with Cystic fibrosis, who lives in Australia, with public healthcare, and "Positive thinking" and growing up wealthy, take it from my perspective- I'm 35 and needed a liver transplant at 15. Then a double lung transplant at 23. All the positive things and money in the world and CF still destroyed my body, by the time i was 25. I'm really over these CF patients that just believe that because they did X, Y, Z,, it's how it turned out for them, doesn't mean it goes well for other CF patients.
I feel like the message of this podcast isn't just about positive thinking. But using your mindset to live the most active and fulfilled life. Sadly, positive thinking alone doesn't give you that. Action is needed.
@@ivands16 don’t minimize their struggle. If they could will themself healthy they would have. Given the little they shared they have gone through an insane amount of pain and suffering. I think people who act like all it takes is a positive mindset are naive and dismissive. Unless you have lived their life you don’t know
@@A---ti3zz nobody is talking about willing oneself healthy. They're talking about making the most of the situation that you're in, which looks different for different people.
@@A---ti3zz Where am I minimizing??? did you read my message? I'm saying this pod isn't about positive thinking.
While i agree with you that she's a lot luckier and probably has a milder case of it than you, there is no harm in giving the average CF patient more hope. A positive mindset and less stress are good for general health.
My husband has CF double lung transplant 5 years ago and is turning 45 in 13 days. It has been a rough ride for him at times and I am grateful every extra day we have together. He is only here no just because he is determined to live life, the access to modern medicine and the type of CF he has along with his sense of dark humour and personality traits that help him everyday. He doesn’t talk about it mouth but he has lost countless of friends to CF which I know has taken its toll on him. He is grateful for every day and lives his life his own way.
@katherinegreen8392 hope he is doing ok, I'm 12 years post double lung transplant 🫁
One of my classmates from elementary school had CF. She was the most energetic and all over the place kid I'd ever known at that time. She trained and was very active all her teen years and a good portion of her 20's, but then the toll of CF really hit. She passed almost 2 years ago at 32/33, leaving behind a child and husband. She truly did live her life to the fullest as much as was possible for her, but you could so clearly see the toll it took on her body. High spirit all the way, but when the transplant failed, she knew that was it.
We were never really friends (for different reasons), but I admired her for her outlook on life and how she managed it all, despite knowing she had a very limited amount of years left.
I work in clinical research for CF and it's amazing seeing how far we've come in medicine. I'm always very happy to see how people are beginning to live a life
WOW! how inspiring! I had a friend who died because of CF. He was too tired and didn't want to be intubated anymore , he was tired of the pain and had no quality of life. ( he had already been intubated 8 times prior). while it's great for her that she was able to develop a good mindset about her life and health, I can't imagine how difficult it would be to push thriugh when it feels like you've been slammed by a truck...
You are so patient and kind. I love how you treat people during your interviews. You let them say their piece and you are a great listener. Your kindness and humility are the reason I watch your videos. God bless ❤
Good evening from south Africa I was born with cystic fibrosis as well I'm 42 now thanks so much for this video
Friend of mine with same diagnosis had a great life through 50 years old
Good to hear
Being told when you're going to die must be the worst sensation in the world! Imagine being informed you'll die at 16. It must be devastating.
Eh, as someone with CF you get used to it. I almost did.
Doctors told me if I didn't change me diet I'd be unalive by 18 due to a liver condition, I didn't change it, I'm 29 now n I feel fine
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My friend's (he was born in the 1970s) parents were told he'd die by age 1, but he survived. The doctors said he wouldn't make it to age 5. He did. Then 10, 16, etc. The whole time, the parents didn't work too hard to teach him life skills because they didn't expect him to get to adulthood. He had a harder time figuring out how to work, pay bills, etc. Maybe the mind-over-matter attitude (or at least a positive outlook) in the PARENTS could have improved my friend's quality of life from the non-medical struggles.
In the end, he got to 42 years old before finally deciding he'd had enough between the lung issues, digestive issues, MRSA, and overall misery that each breath caused.
I had 2 aunts who died from this horrible disease. Things were different in the 60’s, 90’s and even now.
I’m so glad that medicine has come such a long way for those living with this!
It’s basically just luck. For some people tripping is fatal. For others they live with a terminal illness for far longer than they’re supposed to. Stephen hawking shouldn’t have lived as long as he did, but he’s the outlier, the exception.
These lucky people shouldn’t advocate for their lifestyle in people with the same illness as them because frankly speaking it’s irresponsible for them to tell others that they just need to mind over matter their situation.
I think both sentiments are true tbh.
I think I understand your point of view, but I’d like to share a different perspective. I have cystic fibrosis, and for many years, I’ve fought incredibly hard to stay as healthy as possible. My main driving force has always been my love for life and my curiosity about so many different things. I want to make the most of every moment, you know?
If I hadn’t given it my all-training hard even when it felt like I was starting from scratch after every cold, flu, pneumonia, or even things like pneumothorax-I wouldn’t be here today. I’ve lived longer than I was expected to, and I truly believe my mindset has played a big role in that. :)
Of course, I recognize that luck also plays a part, and some people face even tougher challenges. But for me, choosing to fight and embrace life has made a huge difference. So yes, I think advocating a lifestyle focusing on the importance of mental resilience, curiosity, positivity and a love for life is important. I don't think it ever harms, only helps.
An excellent advocate who just refused to let CF break her spirit and love for life was Claire Wineland and many, many people have her to thank for helping them see life with CF differently.
@@osseous42 wow you're so resilient. I can't imagine being like that myself! You're very impressive 😆
Her confidence is something we all need
For anyone else having an issue with this one, you're sensing inspiration p*rn and condescension. Yes, mindset is powerful, but it's not everything. And there is no shame in achieving less than someone else; as long as you're content with what you're doing.
I lost my cousin with CF at 19 years old, her "living life to the fullest" though became drugs which is what took her. My family still says it was her CF that took her because it hurt too much
For your sake, I'd interpret it as them living and dying on their own terms. CF must be such a difficult and unpleasant way to live. Sounds like they found an escape, both temporarily and permanently.
Truly sorry for your loss.
As someone with CF, I can say that CF brings alot of emotional trauma that people often hide, and cope with in other ways. I have mental health issues that are stemmed from Cystic fibrosis.
I meant to only watch the intro cause I was in the middle of mopping my floors, but I ended up listening to the whole thing. What an amazing person she is. I hope to bring all that you guys talked about with me for my days and years to come. Really great episode and conversation 🌻 thanks Mike and Sophie
thats exactly what I felt, I was only going to watch 10 mins, but such a high quality conversation, that I couldn't hit pause
were learning about cystic fibrosis in health and social, an op subject for last yr of school, and learning about it makes me realize how hard it acctualy is for people to live with it. im proud of the people who are managing it and sorry to the ones who cant :(
My best friend has spinal muscular atrophy (SMA). She was so young when it became evident, her life expectancy was 2 years old. She is now 37 years old and, thank heavens for Spinraza.
My daughter has it. Is on Trikafta now and it’s changed all of your lives.
I think I need to adopt her mentality. I have many chronic conditions, and I always fall to the mindset of "I can't." And then I see Sophie, who's basically always on death's door, pushing her limits. I think my biggest issue is that I should have been hitting certain milestones by now. When my sister was 26, she was already engaged and owned a house. Well, she still owns it. I need to find some sort of balance between the two mentalities.
Setting goals and having a positive mindset is great! Maybe not so much when it comes to comparison. “Comparison is the thief of joy”
as a queer “late bloomer” (hate that term), all those milestones people talk about and when to reach them are BS. it’s for a very specific type of person who is straight, cis, able bodied, and middle class or above. i struggled for a long time with thinking “im X years old i should’ve done Y by now” too but my therapist helped me realize that life is not about meeting milestones and moving along a specific timeline. in my mind it makes life seem like a checklist to complete, rather than an experience. hope my advice helps at all, best of luck to you
@tastyjerry I know. It's something I'm working through in therapy, too. (I'm also, I guess you can say, strongly demisexual. Like, I'm not desiring sex, and I'm waiting to find someone I can trust, first and foremost. I guess kinda bordering on ace, but I digress.)
Same I'm right here with you. I'm currently unable to get access to the meds that give me more energy and quality of life, and I'm unsure if I'll be able to, and it's honestly hard to have the mindset of I can and will, when my own body frequently proves I can't midtry... Idk. I'm here with you!
All I’m hearing is that wealth improves quality of life no matter the diagnosis. I haven’t finished the video yet but it would be a disservice to gloss over this fact and focus on just her “mentality” being the key. It is and was wealth.
yes the replier above either isnt a doctor who observes her patients well and doesnt understand that there are plenty of variables to diseases. and people in general want to live. except for those very few individuals who dont. or have severe mental disabilities. which are not the general population. anyway its not use to argue with people who see things with just one lense. but maybe if they read the comments below will actually realize it. and yes the medical professionals in the usa are going down at this point. the few that are so good are very expensive and lots of money is needed. for the average person it isnt attainable.
yeah same thoughts here. im halfway through and she hasn’t once mentioned having a job currently or any of her medical expenses
Wealth in such circumstances usually leads to substance abuse and much worse health... not the amazing things that she's accomplished
@tastyjerry First of all she, like myself is British so the NHS takes care of ALL of our medical expenses so no medical bills to worry about and second she actually mentions "her clients" so it seems she does have a job and is probably self employed.
wow she is so confident. i wish i had that confidence
Even if my dumbest moments confidence is key 😎
Make confidence a lifestyle choice.. This is how she lives
She has a boyfriend probably also that's why
It's narcissism, not confidence. IYKYK. But she made it work for her, so good for her I guess.
Having a purpose greater than yourself, having a strong sense of identity, and being okay trying something and failing are all things that build confidence
Lovely, confident, diligent woman!.🎉
Strong woman. Very good for her. Thank you for sharing your story and your mindset! You’ve created a beautiful life for yourself despite the challenges thrown at you ✊🏾
Great interview. Such good questions and observations.
I hope Mike does another Survivor injuries & medical evacuations video at some point since he didn't react to some iconic ones & there have been more since that video was uploaded.
There was a story of a young man who lived bravely with his CF sadly he passed at 38. But he too let nothing stop him
Was a pediatric GI RN for 30 yrs. When I started. Many CF patients died in their teens. When I retired, I knew of several living into their 50s+.
Why do you think that happens? I'm curious to know
My grandson has CF.
So inspirational! That is absolutely amazing of her! WOW!
What a wonderful conversation. You both are inspiring people!
The confidence that she has is admirable 👏
I have fibromyalgia. Some days are debilitating but i generally try to push myself and not let it control me. You are very motivating! ❤🙌💪
I have fibro too! Wishing you all the best, and low pain days! We can do this ❤
@ you too! ☺️🙌
Wow what a rockstar!!! She’s amazing! This was truly motivating❤❤❤
I can never be that confident or brave at all like her…thank you doctor mike for an amazing vid😆😆😆
limiting belief spotted!
You will once you believe
We have people with CF living into their 40s and having children. Which is pretty wild compared to just a decade or two ago. I read some medical journals on it for an L&D rotation and didn't even realize they could survive a pregnancy, wild stuff.
she is very inspiring and very bright!
I love this video !
Love the vids.
Thank you for this video! As my name suggests, I have CF as well. I am in admiration at The 36 Marathons in such a Short amount of time. I appreciate the ability you have to spread awareness to this little known but widely suffered disease.
Fun fact, when I was born my liver was so enlarged it made it into a hospital textbook.
Hey I have cf too
She looked death in the eye and said, "I'm kinda busy right now." Inspiring to hear that kind of enthusiasm and determination in such a defeatist-centric world.
Bless her and everyone with cystic fibrosis
Fantastic episode! It led me to adding more quotes to my home office to keep focused and motivated 😊 Appreciated the perspectives (and reminders) on understanding risks, controlled suffering, the power of hope, and how doing hard things makes life easier.
Please share more people with chronic illnesses ❤
I was told I had a 50/50 hancenof living to 18. I'm now 43 with CF and going strong.
This was an awesome and amazing podcast. I love hearing other people's health journeys. Even though I can't do some things anymore, I need that reminder to keep going, and that it's going to be ok. So inspiring. Thank you.
🙈watching this, as a runner, from my comfort zone that i rapidly sank into after experiencing too much stress that caused me to eventually break under pressure, gradually stop running and gain a lot of weight is so confusing..like my motivation to do anything vanished.. i've run daily for years and now i can barely make myself run once a week i feel like i've lost myself..and there she is 🌻🙈eerie..watching and listening her as if looking in the mirror and yet..my soul left me. i feel nothing and no words help me because all i want is to eat, watch movies, do nothing, sleep..i feel like i failed even tho technically i still have my muscles and all that's changed is weight (+10kg) but my brain just says "i don't want to and i see no reason to do it now. i want to eat persimmons, sweet creamy cottage cheese, watch series and sleep"..
🙈i used to wake up at 5am every day workout then run for years..now..nothing..i don't even want to wake up..
anyway.. she's..thank you for inviting her 💖🌻🙈i hope i'll get back and be strong again like her🤝💕🤗
I hope you can find out why and push through if possible ❤
You might be experiencing the symptoms of some kind of mental health condition. There might be treatment options available. I would maybe talk to your PCP about getting a psych eval.
@@tamberjune trying my best🙈did wake up at5am today, worked out a bit and ran a little.. i know the reason tho.. starting a new relationship(after being single and happy for years)+several checkup appointments bloodwork and such spanned over two months+a very restrictive diet prescribed by my doc+daily long distance running(20km+)+lack of sleep+changing seasons+breaking up
TLDR stress🙈thank you for your kind words💖🌻 i'll keep trying to get back one day at a time✨
@@ParadymShiftVegan i don't trust local mental support🙈i live in russia..but i'll try to find a doc online thank you 💖
I'm such a big fan of your videos doctor Mike 😊😊😊
Been subscribed to your channel for a while, keep it up!
Hello Dr. Mike!! I've been following your channel for 4 years now, and I'm always amazed by your ability to make complex topics so easy to understand. Your passion for medicine is truly inspiring! I've learned so much from your videos, and they've helped me in biology.. Thank you for sharing your knowledge with the world. Your videos are not only informative but also incredibly entertaining. Your humor and personality make learning fun!
Once again, thank you so much Dr. Mike ❤❤
Sending love from India 😄😄
she's wonderful 💖 thank you, dr mike🤗✨
I love this video ❤❤❤
can u do virtual operation again? i just watched that video and i almost choked on a popcorn 😄😆
You should do a video on school food and why they are good or bad for you
Honestly, I know it’s a more in-depth explanation, but explaining the math behind life expectancy for conditions might help. Everyone says the doc told me I’ll be dead by such and such age, when it’s really 50% of people with your condition are dead by then, or 90% of people with your condition are dead by then. It gives you the reality of your situation while also allowing for hope of beating the odds.
Good for her but is it confidence or just late manifestation of symptoms? Let's not assume a positive attitude can change physiology. I hope she enjoys life no matter what.
It absolutely can affect and therefore change your physiology. Look it up.
@ 'can' is not 'does'.
@@bobhawkey3783 it does
i binge watch ur videos, how am i so early lol
What an inspiration 🎉
She is extraordinary, but she is coming from a place of great privilege. "Most people just want to make as much money as they can, but whats the use of millions in the bank if you're not living". This is quite out of touch with the vast majority of the general public. People do WANT to live. We are not hyperfocusong on money to simply get millions in the bank. We are losing precious time "living" while we work to barely get by. It is not as simple as just waking up and realizing we need to LIVE when you're 3 missed mortgage payments away from being out on the street. Like us, she is a product of her environment so I dont blame her, but she is a bit ignorant and naiive in a lot of ways.
Truly inspiring! Please keep doing content like this because we all need be reminded of what is possible even when someone might have the mindset that one can’t do something (meaning the naysayers in society who tend to think that just because someone has a chronic and/or terminal illness they can’t do certain things when in fact they can and quite well speaking from personal experience here and in no way I’m I trying to undermine the fact that there are different factors that play a role in the overall success of an outcome in terms of treatment, especially when taking in account one’s overall health in relation to severity/type and access to care) due to a health condition/challenge that would otherwise create a roadblock and not allow someone to lead a meaningful life.
As always, thank you, Dr. Mike for all you do and for continuing to help change the conversation for those of us who deal with various health challenges. I say this as someone who has dealt with the daily struggles that stem from having been diagnosed with cerebral palsy at birth. That being said, I am well into the 37th year of my journey, and have never found a challenge that I haven’t been willing to overcome. Cheers to all the warriors out there that have continued to defy the odds. You got this! 💪🏼 💚
I have CP too!
@@arivontrapp nice to meet you fellow CP warrior. 💚 💪🏼 Best of luck to you. 😊
@@VanessaR87 💚
i do think its important to have a postive attitude and it does help in regards to how we view things in life. but just a positive attitude isnt the answer to disease all the time. there are plenty of variables to if we succumb to disease and if we live through it. like access to good doctors, family support, god runs the world and if its destined for someone live nothing stops it from happening including severe deadly diseases. as we have all witnessed. and some can fall and die because of the type of outcome. clearly we need positivity but its not the only thing. lets have a broad picture and not look at things in black and white.
.Thank you.
I have only run two marathons. And I am slow as molasses. But it’s true. It’s more mental than physical.
Love the vids! 🙏🏽💙 Appreciate you Dr. Mike. Thank you for all you do.
I've never been this early!! Love you vids!!
Dr. Mike: just wonder if you would research and do an episode on resident burnout? This topic has drawn a lot of attention on social media recently, and impacting quite negatively. Maybe interview Dr. Sinsky of AMA, Dr. Tait Shanafelt of Stanford, or Dr. Jake Goodman, just a few names, to bring a realistic and positive influence on social media.
I love you doctor Mike, no seriously
The only thing that I believe in, despite being a Doctor myself, is willpower to defeat the condition you have. Nothing can be stronger than your positivity, and the sheer will that you harbor to defeat your illness. Even The Fates that root against you will have to bow down to let you win, and Sophie Grace Holmes, you are a clear example of that.
Thanks, Doctor Mike, for such a wonderful and inspiring episode, that riled me up to do better too!
always about the mindset
everyone has a will to live. and i know very strong willed people who had deadly disease and succumbed to their deadly disease because not everything has a cure. we dont run the world. g-d runs it. and i suggest you look around at whats going on. your patients want to live. and their willpower is stronger then you think. if you havent seen it. maybe you havent observed them well. or dont understand that the nature of humans is to want to live.
You can't seriously be a doctor with that ridiculous belief
2 take aways for me so far. 1, mindset backed up by body can take you amazing places. 2, money is everything.
Hi
Had a childhood friend die of CF at the age of 40. At that time, that was pretty much an incredible feat to survive that long. It's just a shame that despite having the human genome CRISPR technology, we can't use it to just fix this. (didn't have it then)
What's really irritating is this woman, like so many others, has a fantastic will to live - and not just survive. And reproduction has got to be a terrifying reality. Her parents have got to be incredible people for her to have this attitude.
I'm sorry for your loss. Every person I've ever met with CF are truly incredible people ❤.
Wow. This woman literally just says "Ain't got time to die!" What an inspiration.
DOCTOR MIKE PLEASE DO STRANGER THINGS
I love your videos and your dogs
Ily
I work with elementary students every day. One of the hardest things for them is being told they made a mistake...they take it personally; they think they are a bad person because they made a mistake. First lesson: it's not personal. We are going to let you know when you make mistakes so that you can learn and grow.
She's really inspiring, even for me who does not have CF. I enjoyed this interview. But I also know that CF is different for everyone who has it. I don't personally know anyone with it, but I happened to watch a few different RUclipsrs with it. I watched The Frey Life a lot. Mary went through a lot of suffering with her CF. But she was of the mindset that every little moment counts. This was the mindset that her and her husband live by. Eventually, she was able to take Trikafta, and it was like a miracle drug for her. Her and her husband were able to even adopt some kids when it would have been impossible before that drug. And then there was Stephi Lee, whose CF seemed much more mild than Mary Frey's, but she was told she wouldn't live into her 20s so she made every day count. Now she is also on that new med and doing better. Then there was a girl, I forgot her name, but her case was much more severe. She got a double lung transplant but died shortly after the surgery due to a blood clot.
Doctor Mike, I have a question so I am 12 years old, and if I drink coffee almost daily, does it stun my growth?
This makes me wonder if Mike would value a conversation with Ellen Langer about mindset due to diagnosis communication and its impact on outcome
I think when you're born sick and reach a certain age I don't think people expect you to get out and get a job and live a "normal" life. Unless of course that's what the sick person wants.
I love her confidence
Thank you for this video. I don't have CF but I have RA, OA, torn meniscus, herniated lumbar disc, and will be 60 in a few weeks. Ran my first marathon (after 8 half marathons and a 25k) earlier this fall. It was definitely mental. The race I ran was two out-and-back loops. At the end of the first it was pouring rain and starting to get really muddy and many people stopped and took the medal for 13.1. I managed to make myself turn around and go back out and finish. If I can do that, what else can I do? My mom had severe osteoporosis. My bones are great. I lift 2-3x a week despite hating it (soooo boring, would rather run!). My biggest challenge is enough sleep, but I'm working on that. I'm absolutely not watching this video at midnight.... :-) Suffice to say, yes, everyone has limits they can't overcome. But if you don't try, you won't know what those limits are.
Can you look at top gear and grand tour injury’s?
This is so cool and amazing how she did all this
Omg wait I just saw that Dr.Mike hearted my comment and for some odd reason that made my day😅😅😅
this is so beautiful
do you recommend ashwagandha ?
Dr. Mike do a RUclips video on how sooo many doctors dismiss patients symptoms
And it ends up being something and or something serious!!
She’s definitely awesome.
And also, let’s not forget survivorship bias here
Interesting. Could you elaborate?
While it is great she can do endurance/marathons with CF - I know for a fact I can't and I DON"T have CF or asthma (other lung problems). Not a matter of mind over everything - I can barely run a 880 in high school and in reality I was not running the last half lap. I was dead by halfway. I am never going to be able to RUN the 880. My genes, my breathing, just don't work for those things. I am never going to be a star soccer player, football, race car driver - no matter how hard I try or how much I want it to be true.
VERY few (I would argue no one) can do anything they want - just mind over matter. Reality is - her body is designed to do well at what she is doing - endurance/marathons.
My brother was born with Cystic Fibrosis. He was told he would die as a teen. He played high school baseball - throughout high school. He went to and graduated college. After collage he played semi pro baseball. Was always athletic. He had his first bout of pneumonia at about 22. He didn’t have pneumonia again until 30. Not until 30 was he continuously sick and in and out of the hospital. He was put on the list for a lung transplant at 32. He had an hospitalization where he had to be put on a ventilator. After that he decided that he would go DNR. He died at 33. The day after his death, his wife received the call that there was a lung available. I wish he hadn’t decided to go DNR. That was 30 years ago.🙁
How impressive 😮
Yeah, I live life to the fullest of my financial ability, if I could climb some bullshit mountain, I would too
Amazing person
The mind and body are the most incredible things God created
I want to be like her when I grow up.
"WHO'S GONNA CARRY THE BOATS!?!?!?!" - this chick probably
How did Sophie Grace Holmes
Do you mean how old is Sophie Grace Holmes
Hey Dr Mike, can you maybe give me a reason that I eat large portions of food but I still feel hungry when I eat those portions, but when I don’t I feel like I am absolutely full?
DR. MIKE ANSWER
She and Doctor Mike definitely speaks for the upper middle-class. It's easy to say "live your life" if you belong to that class. For poor people who take three or four jobs in a day just for subsistence, life is actually work 24/7. For a person from the Global North, we come to the realization that we need to struggle and topple down a social system that does not allow us to live our life before living it the way these speakers are saying
my family has connective tissue disorders. most of us weren't diagnosed till adulthood but even as kids we had some pretty big set backs
my brother was told he would be in a wheelchair by the time he was 20. he said NOPE and became a pro skateboarder.
my sister was told it was to dangerous to have children, she said NOPE and had 6.
i was told i'd never be strong and i said NOPE i took up body building.
It is sucks that he doesn't read the comments.. had an important question