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Making our own decisions about our health

Chronic Pain | Last Active: Dec 12, 2023 | Replies (49)

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@ibdsupportcoach

Thanks for the welcome message.
I agree with you that for someone with chronic pain, such as that associated with IBD, it is hard to believe that there is no magical pill or cure for the invisible disease. It took me years of experience after diagnosis to come to that conclusion. During the journey, I learned the path to come to terms with an incurable disease. That is why I am the best at understanding a patient's mindset and accepting the disease to be able to cope with its symptoms.
Your question about being certified by an organization reaffirms what I was talking about. You are still asking for a certificate, ignoring living the real experience and being able to guide others going through similar circumstances. What led me to that path is exactly what patients in this post started complaining about. Being on their own without anyone to empathize and guide them, especially those that we trust our lives with. The lack of awareness and care led me to put my knowledge and experience at the service of those who mostly need it "patients".

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Replies to "Thanks for the welcome message. I agree with you that for someone with chronic pain, such..."

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.