Making our own decisions about our health

Posted by mikaylar @mikaylar, Dec 7, 2023

Does anyone feel that we are left to decide on our own if and what we should do about our health? I feel my doctors are not giving me educated answers. Try this; try that; go somewhere else.

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@gravity3

Finding a qualified quality functional medicine physician seems like the way to go but they don't accept insurance
I understand this but only the wealthy can afford this.

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I'm not wealthy but I can afford it. I'm 75 and on Medicare but the extra money for a functional medicine doctor is well worth it. What good is having Medicare pay for a regular MD who doesn't do anything to help you and might actually make you worse?

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@mguspixi25

Hear hear @ibdsupportcoach ! Qualifications aren’t automatically a ticket to knowing what a person is going through, nor a ticket to knowledge; it is only a formalisation of a process of learning that a person has gone through, with no assurance as to the quality of their knowledge or comprehensiveness within (which often does include lots of technical info, but very little experiential info).
Having formal qualifications in allied health, I can assure you that when I graduated, there were still some of the grad class unable to do their job, while there were some of us highly competent both technically and practically, who could run rings around others with the same piece of paper. The difference - besides diligence in learning - was lived experiences in what we learned, and how we applied that lived experiences learning to complement and enhance service delivery. The system isn’t set up to facilitate using your personal experience alongside your professional qualifications, and this is a massive area of advantage for the sole development of lived experience support exactly as you’ve described. I also use my lived experience (not my qualification) as a means of coaching, and I do not have a qualification in that, but it helps people enormously. The realm I am in with regards to this is peer guide support. I have not any formal quals in this area, but it’s highly effective in helping people. How do you get ‘qualified’ in telling your lived and learned experience? By refining and practicing your craft of learning more about helping yourself, trial and error with those learnings with yourself, then sharing what works in a responsible and caring way - from what I’ve read in your posts, you’re highly ‘qualified’ in sharing lived experiences as a support coach!
I live with lymphocytic colitis and was on Entyvio (and a bunch of other meds), and once I was out of a terrible flare, I worked diligently to reduce all meds using lifestyle and diet, along with an immune approach that was quite novel, and that process took me 12 months. Now, I am in remission.
Reading your post reminded me of all the things I did to get better. I think you sharing this knowledge you’ve accumulated is a great asset to the IBD community! Yes it would be nice to have a piece of paper to satisfy the paper hungry out there, but a support coach in a niche area would need to have a teacher in that same niche area - where do you find them, and where do they get their qualification..? After a while of thinking about this, getting a ‘qualification seems a nonsensical process (said with tongue in cheek here, but I think to try to get a qualification as an IBD support coach seems moot), and the process you’ve undertaken is much more relevant and useful in terms of providing support coaching delivery.
I used to be a teacher, and I had the privilege of having students in my class that had no formal quals, but they’d been diligent in their learning and life experience - they knew enough to sit final exams on their first day in class, and I often learned things that I could never find in the research or text books that are solely written and distributed by academics mostly devoid of lived experience (you can see the perpetuation of technical learning from research outcomes, through the teaching of teachers, to students, into practitioners; this is where what you do is essential to wholistic approaches of care).
Thanks for sharing that very important perspective demonstrating how an inclusive approach is absolutely complementary to formal medical care, and provides so much more than what a medical consultation can do for a person.

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Thank you for your supportive message. I am glad to hear that you have achieved remission in a natural way that is less reliant on medication. Being aware that some diseases are caused by simple things like diet and lifestyle enables us to take better preventative measures. Only those who have experienced a flare-up know what it means and feels like to be in remission.
I completely agree with your message! It is true that qualifications do not automatically translate into understanding or knowledge. Lived experience is invaluable, especially for complex conditions like IBD, in healthcare.
You hit the nail on the head when you mentioned that the system is not set up to utilize lived experience alongside formal qualifications, which is a huge missed opportunity for patients and practitioners alike. Your testimony about my approach to IBD coaching has added to my credentials, and I am grateful for that.
Your own story about overcoming your flare is truly inspiring! It's commendable that you're sharing your knowledge and helping others through similar experiences. Forget the piece of paper – your lived experience and dedication to learning make you incredibly qualified to be a support coach.
I understand your point about the absurdity of trying to get a "qualification" in lived experience coaching. It is not equivalent to traditional academic learning. Your journey and process are far more relevant and impactful.
Furthermore, you are correct about the limitations of purely academic knowledge in healthcare. Textbooks cannot teach you the emotional, practical, and real-world challenges that patients face. I was a teacher and head of the health science department at a high school that graduated students to be in health professions. My focus was on creating programs that allow these students to have hands-on and real-life experiences. In education, we create simulation centers to provide a close-to-reality virtual experience, but we do not recognize a real live experience academically!
If a person buys a new phone, for example, would they turn to someone who has only read the manual or to someone who has owned that phone for years and knows how to operate it and troubleshoot it?
Walking the path to healing is the best-qualified teacher for a real experience with chronic incurable diseases. We need more voices like yours to bridge the gap and create a more holistic approach to care.
Thank you for sharing your valuable perspective! We must continue to have these conversations and break down the barriers to integrating lived experience into health coaching.

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This is not a site to advetise a business or seek clients.

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@ibdsupportcoach

Thank you for your supportive message. I am glad to hear that you have achieved remission in a natural way that is less reliant on medication. Being aware that some diseases are caused by simple things like diet and lifestyle enables us to take better preventative measures. Only those who have experienced a flare-up know what it means and feels like to be in remission.
I completely agree with your message! It is true that qualifications do not automatically translate into understanding or knowledge. Lived experience is invaluable, especially for complex conditions like IBD, in healthcare.
You hit the nail on the head when you mentioned that the system is not set up to utilize lived experience alongside formal qualifications, which is a huge missed opportunity for patients and practitioners alike. Your testimony about my approach to IBD coaching has added to my credentials, and I am grateful for that.
Your own story about overcoming your flare is truly inspiring! It's commendable that you're sharing your knowledge and helping others through similar experiences. Forget the piece of paper – your lived experience and dedication to learning make you incredibly qualified to be a support coach.
I understand your point about the absurdity of trying to get a "qualification" in lived experience coaching. It is not equivalent to traditional academic learning. Your journey and process are far more relevant and impactful.
Furthermore, you are correct about the limitations of purely academic knowledge in healthcare. Textbooks cannot teach you the emotional, practical, and real-world challenges that patients face. I was a teacher and head of the health science department at a high school that graduated students to be in health professions. My focus was on creating programs that allow these students to have hands-on and real-life experiences. In education, we create simulation centers to provide a close-to-reality virtual experience, but we do not recognize a real live experience academically!
If a person buys a new phone, for example, would they turn to someone who has only read the manual or to someone who has owned that phone for years and knows how to operate it and troubleshoot it?
Walking the path to healing is the best-qualified teacher for a real experience with chronic incurable diseases. We need more voices like yours to bridge the gap and create a more holistic approach to care.
Thank you for sharing your valuable perspective! We must continue to have these conversations and break down the barriers to integrating lived experience into health coaching.

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I’m always supportive of using lived experience as a valuable resource in the care continuum, and any medic who ignores or dismisses a person because they are bringing in their experiences, and research related to this, is actually not doing anyone any good at all.
Lived experience in health is a large area that is currently not accounted for in the current heath systems, however please be clear that I am not promoting your coaching approach or business individually because I know nothing about your coaching business 🙂
Please I ask that what I say here does not get interpreted or used in part or in whole as promotional or recommendation material anywhere (internet, brochure, electronic communications, etc), in any format (verbal, written, electronically, etc).
Also, just to kindly clarify, my IBD isn’t caused by lifestyle factors; I have an underlying immune disease confirmed to be the cause, and by treating immune disease (as mentioned in my previous comment), while facilitating healing of bowel tissues using dietary modifications, after 12 months I went into IBD remission (not cured - I still have what I call mini flares). In my case, unfortunately nothing regarding the immune disease or the IBD was/is preventable, and prior to the symptoms becoming apparent, my diet and lifestyle was 100% healthy (no unhealthy habits or consumption of alcohol/smoking/added sugar/carbonated flavoured drinks/all food make at home from produce/no added chemicals or preservatives, etc..I used to be a fitness model so I very much took my health and wellbeing seriously). The immune disorder I have is genetic, so there is little impact that diet and lifestyle has on that, and it depends on what that is doing as to how bad the colitis is (then I use food as medicine to treat the symptoms of IBD, along with adjusting immune medication).
The peer to peer/patient to patient guidance/system navigation and support I provide is free of charge - I do not take payment for this because often the people whom I speak with have already depleted their resources trying to get medical care and still pretty much at square one, sadly. So I don’t charge them anything 🙂
..this is not to say that what I do has no monetary value; arguably, it does. However, I choose to maintain the peer to peer dynamic in all aspects of the relationship, including financially (if I took money, it changes the connection to an economic disparity thus giving me a power advantage - something I don’t think is appropriate in a peer relationship with someone at any disadvantage to me when I’m peer guiding).
This is definitely where none of my qualifications are useful - only my experience living with navigating the health systems and insight into the indicators that can inform a person about deciding on who to see as their medic. As well as informing them of their rights under the relevant health policies in this country and in their state (minimum set standards of care, information access rights, recourse and complaints rights, etc).
I guess that’s a bit different to coaching?
I also support people going through crisis (no charge) to help them cope and not take any drastic actions in the moment (volunteering for a charitable organisation), which I think is also different than coaching, I’m guessing.
There is a huge gap between traditional delivery methods of care in medicine and person to person support within the medical system, and I think lived experience can bridge that gap. In terms of a qualification for this, then an education structure would have to be established, tested, certified, and delivered (that would take decades here because firstly finding the right people to develop it - with the right qualifications - would be extremely difficult..what came first: the chicken, or the egg?). So I think in that context, a qualification is kind of a moot point; much better to use personal skills of what someone has experienced going through the systems and relaying that ‘heads-up’ info to the new patients/people/carers/family members entering into the medical industrial complex (used as a term to describe the industry and its complexity; not as a collective noun).
I just want to kindly clarify the context of my former post, which was from the perspective that lived experience is under utilised and under valued in traditional healthcare delivery methods, and that to go down the path of qualification in this area doesn’t really achieve much, or would carry much weight, because each persons experience is unique, and the knowledge is personal (specific to them, in the way they interpreted their own life and experience), so then relaying that lived experience to someone to help them will vary greatly between people giving help and the person they are helping, to enable establishment of a connection (standardised learnings for which a person can get a qualification does not fit this methodology of engagement, and standardised delivery - saying the same thing to different people - doesn’t work when supporting truly individualised approaches and care, which are essential because each person that received peer to peer support has different circumstances…financial situation/culture/family circumstances/faith/mobility & travel limitations/emotional resilience/cognitive function, etc which must be considered to enable provision of the best possible support).
I lost a teaching job because I was adding in these aspects into my classes when teaching anatomy (I mean, why else would students be learning anatomy besides to be working with people who are unwell therefore vulnerable? They needed to know how to approach a person as an individual with unique circumstances and needs), but out of all the teachers in that tertiary institution, my pass rate was 95% (comparison pass rate was 55% with other teachers), so my students knew their stuff before they left the room (pass rate is how many students pass your class when they sit their final independent exams - teachers were not aware of the exam content or questions, so our job was to teach everything and then let the student perform during the tests).
I do think lived experience is very much overdue in the current complexity of the system, however reading your message I am thinking that there may well indeed be a variety of methods to do this 🙂

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@mikaylar

This is not a site to advetise a business or seek clients.

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I see your point 🙂

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@gravity3

How very condescending.

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yes and that is always his attitude. 10 minutes for a telephone appointment and 5 minutes in office. That is why I prefer my rheumatologist, she cares and listens.

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@mikaylar

This is not a site to advetise a business or seek clients.

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Who said it is?
When someone asks who you are and what you do, you will be courteous enough to answer them. That will disclose information about your program or what you call "business".
I do not expect to get clients from this site and that was not my intention.
After all, I know that it is a show of complaint.

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@mguspixi25

I’m always supportive of using lived experience as a valuable resource in the care continuum, and any medic who ignores or dismisses a person because they are bringing in their experiences, and research related to this, is actually not doing anyone any good at all.
Lived experience in health is a large area that is currently not accounted for in the current heath systems, however please be clear that I am not promoting your coaching approach or business individually because I know nothing about your coaching business 🙂
Please I ask that what I say here does not get interpreted or used in part or in whole as promotional or recommendation material anywhere (internet, brochure, electronic communications, etc), in any format (verbal, written, electronically, etc).
Also, just to kindly clarify, my IBD isn’t caused by lifestyle factors; I have an underlying immune disease confirmed to be the cause, and by treating immune disease (as mentioned in my previous comment), while facilitating healing of bowel tissues using dietary modifications, after 12 months I went into IBD remission (not cured - I still have what I call mini flares). In my case, unfortunately nothing regarding the immune disease or the IBD was/is preventable, and prior to the symptoms becoming apparent, my diet and lifestyle was 100% healthy (no unhealthy habits or consumption of alcohol/smoking/added sugar/carbonated flavoured drinks/all food make at home from produce/no added chemicals or preservatives, etc..I used to be a fitness model so I very much took my health and wellbeing seriously). The immune disorder I have is genetic, so there is little impact that diet and lifestyle has on that, and it depends on what that is doing as to how bad the colitis is (then I use food as medicine to treat the symptoms of IBD, along with adjusting immune medication).
The peer to peer/patient to patient guidance/system navigation and support I provide is free of charge - I do not take payment for this because often the people whom I speak with have already depleted their resources trying to get medical care and still pretty much at square one, sadly. So I don’t charge them anything 🙂
..this is not to say that what I do has no monetary value; arguably, it does. However, I choose to maintain the peer to peer dynamic in all aspects of the relationship, including financially (if I took money, it changes the connection to an economic disparity thus giving me a power advantage - something I don’t think is appropriate in a peer relationship with someone at any disadvantage to me when I’m peer guiding).
This is definitely where none of my qualifications are useful - only my experience living with navigating the health systems and insight into the indicators that can inform a person about deciding on who to see as their medic. As well as informing them of their rights under the relevant health policies in this country and in their state (minimum set standards of care, information access rights, recourse and complaints rights, etc).
I guess that’s a bit different to coaching?
I also support people going through crisis (no charge) to help them cope and not take any drastic actions in the moment (volunteering for a charitable organisation), which I think is also different than coaching, I’m guessing.
There is a huge gap between traditional delivery methods of care in medicine and person to person support within the medical system, and I think lived experience can bridge that gap. In terms of a qualification for this, then an education structure would have to be established, tested, certified, and delivered (that would take decades here because firstly finding the right people to develop it - with the right qualifications - would be extremely difficult..what came first: the chicken, or the egg?). So I think in that context, a qualification is kind of a moot point; much better to use personal skills of what someone has experienced going through the systems and relaying that ‘heads-up’ info to the new patients/people/carers/family members entering into the medical industrial complex (used as a term to describe the industry and its complexity; not as a collective noun).
I just want to kindly clarify the context of my former post, which was from the perspective that lived experience is under utilised and under valued in traditional healthcare delivery methods, and that to go down the path of qualification in this area doesn’t really achieve much, or would carry much weight, because each persons experience is unique, and the knowledge is personal (specific to them, in the way they interpreted their own life and experience), so then relaying that lived experience to someone to help them will vary greatly between people giving help and the person they are helping, to enable establishment of a connection (standardised learnings for which a person can get a qualification does not fit this methodology of engagement, and standardised delivery - saying the same thing to different people - doesn’t work when supporting truly individualised approaches and care, which are essential because each person that received peer to peer support has different circumstances…financial situation/culture/family circumstances/faith/mobility & travel limitations/emotional resilience/cognitive function, etc which must be considered to enable provision of the best possible support).
I lost a teaching job because I was adding in these aspects into my classes when teaching anatomy (I mean, why else would students be learning anatomy besides to be working with people who are unwell therefore vulnerable? They needed to know how to approach a person as an individual with unique circumstances and needs), but out of all the teachers in that tertiary institution, my pass rate was 95% (comparison pass rate was 55% with other teachers), so my students knew their stuff before they left the room (pass rate is how many students pass your class when they sit their final independent exams - teachers were not aware of the exam content or questions, so our job was to teach everything and then let the student perform during the tests).
I do think lived experience is very much overdue in the current complexity of the system, however reading your message I am thinking that there may well indeed be a variety of methods to do this 🙂

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I do not expect you to promote my coaching program. I think it is premature to promote anything to individuals who are insecure and fear any new approach to their treatment, even when they ask for it!
The belief that we will accept only "free services" from non-medical professionals or we will call it business promotion and ban it, is limiting. I think people have chosen to pay the same people to do the same service. Why complain in the first place if your choice is not to change your mindset?

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@ibdsupportcoach

I do not expect you to promote my coaching program. I think it is premature to promote anything to individuals who are insecure and fear any new approach to their treatment, even when they ask for it!
The belief that we will accept only "free services" from non-medical professionals or we will call it business promotion and ban it, is limiting. I think people have chosen to pay the same people to do the same service. Why complain in the first place if your choice is not to change your mindset?

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Thanks for clarifying you’re not going to be using my content as promotional material; I must’ve misinterpreted your previous reply stating “Your testimony about my approach to IBD coaching has added to my credentials, and I am grateful for that”, considering that sentence in your post wasn’t contextualised.
I was attempting to provide clarity around my post, which didn’t include any such endorsements 🙂
I would agree that it’s somewhat premature to promote anything in any context external to acceptable channels where people may understand that promotional materials may be presented to them, or where they seek them out, and further I think to promote through channels that aren’t designed for promotion, or to promote to people who don’t expect it is potentially crossing a boundary (as well as being somewhat of a paradox insomuch as it seems illogical to promote anything to anyone who appears insecure and fearful of new approaches to treatment; promotion could be deemed as a form of coercion in that instance, maybe?)
And that’s an interesting concept you’ve raised regarding beliefs around accepting free services vs business promotion being ‘limiting’; I don’t actually see the connection, and it’s certainly not what I described in my last post (which is self-explanatory), so I think if you’d like to expand on where you’re heading with that new concept, I’d be very interested in doing my best to understand where you’re actually coming from 🙂
I’m guessing that the understanding I have of peer based positions (traditionally not paid for directly from the service user to the peer, and without the limitations of contractual agreements) is vastly different to your views on coaching (which I understand is your own business and you get direct payment with a contractual agreement between you and the coachee as to what is included and the limitations of your role and their participation that sets up a certain dynamic of expectations within and between that dynamic, which does not exist in peer connections and support) where you make a direct living off of the process of coaching someone, and I get enormous amounts of personal satisfaction from helping someone free of charge.
If people choose to pay you, then the concept of premature or unwanted promotion is kind of negated, I’d say. If people want to pay me, I ask them to donate it to a charity of their choice, so I maintain the peer/patient dynamic free from obligation or change in dynamic (which also benefits me, because to have no obligation from a payment means I have a vast amount of freedom in what I do).
And lastly, would you like to refine your final sentence, as it doesn’t clarify whom you are referring to? It doesn’t apply to me, considering I have not complained about changing any mindsets… If I am to make an observation, it does appear you’re on the defence with a poorly planned attack; please feel free to clarify any points you’ve made, and back them with justifications, logic, and calm reason, and I would be more than happy to engage in mature discussion to explore said reasoning.
Otherwise, I bid you adieu, and move on to a more engaging and respectful discussion that has a little less mud slung around the virtual chat room 😉

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Grow up kids, and stop the complaining show!

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