A recent medical encounter sharpened my awareness of how siloed the medical profession has become and how rare it is to have a "provider" (I hate that euphemism) who can see us as a whole person. Case in point... I have been experiencing significant pain in my left heel and ankle for over a year. I initially went to a podiatrist, who suggested some different shoes and arch supports (done) and a few stretching exercises (also done). They were helpful, but not enough. I explained the dilemma to my PCP, who asked if I'd like to see an orthopedist who specializes in heels and ankles. I was so excited to know that there was someone with such a speciality nearby, and went to my first appointment with eager anticipation of getting some relief. I stopped in Radiology for some X-rays beforehand and was well prepared with my questions and concerns.
This is really nice Hal. I appreciate especially the emotional detail: the excitement for the specialist, and the anger, frustration, depression. Familiar feelings!!
Thanks Brian. I hear you!!! I am happy to report that the physical therapy seems to be helping. My PT cautioned that it would be a slow process ("like watching grass grow"), but that I'd see improvement by the end of the summer. So far, so good. That negative medical encounter certainly fueled me to action.
Hal, that encounter with the doctor was AWFUL! So sorry you had to endure that! I like all your ideas for constructively and reflectively moving forward! Great piece.
I'm having a similar problem - a TMJ disorder, since it involves the jaw, it is foreign to my PCP. I am seeing a TMJ dentist who specializes in jaw issues, headaches, etc. who does not accept any health insurance (altho they send proof of my payment to my health ins, which I appreciate). When I speak to my health ins. company, they think I'm calling about dental insurance and I have to explain that it's not a dentist for teeth cleaning... Very frustrating! It's like trying to be my own PCP. I can't tell you how many times I have felt desperate and anger over this situation. I feel like the health system should not be up to us to figure things out, but they are!
So very true!! And we have the education and resources to advocate for ourselves and our loved ones. There are so many who just have to buckle under. I was so glad to hear that medical debt will no longer be considered when calculating one's credit score. But that's after the fact. Our system is so broken....
We have been colleagues and friends for a long time, dear Hal. We have written professional texts together and exchanged a few hundred written messages. But it is now, thanks to your contributions on Substack, that I am discovering that, in addition to many other good things, you are a very good writer. The constraints of professional writing and the brevity and informality of written conversations did not allow me to see it as clearly as these more personal texts. For example, in this last text based on a rather grim encounter with a super-specialist in heel and ankle, you manage to make an amusing description of a rather serious matter. On the other hand, beyond the surface, there are very deep things and very personal reflections that I thank you for making available to us.
Thank you so much for this thoughtful comment. It has indeed been liberating to be able to write about a broader range of topics and in a less constrained style. I do enjoy writing and find that it helps me sort through my own thoughts. I did wonder whether anyone would care enough to read what I wrote, and I went back and forth for about a year before deciding to start. But one day in the car I was listening to a radio program where several writers were giving advice to writers who were starting out. A number of the new authors expressed that same concern about whether they had anything to say that the world would care about. One experienced writer said that he had also struggled with that, and finally decided that if even one person found what he wrote about to be useful (even just thought-provoking), that would be enough. So that helped me decide to proceed. I was a pretty active blogger in the early 2000s, but my posts were typically shorter and less personal. Once I moved to UMass, there was little time for such writing. I'm very happy to be writing in this new way, and I am also enjoying the discovery of other writers who are addressing similarly personal topics in very thoughtful ways. Thanks for joining me on my journey. (Although I know you have been there all along!)
Hal, I've been enjoying reading your beautifully written posts, and they all resonate with me. Over the past 6 months, I have been helping my sister navigate the medical system, and your experiences map onto ours. We did not find any continuity of care or concern for the whole person until we ended up at Cedars Sinai in Los Angeles where the amazing team of doctors there did everything possible to get a diagnosis. Although the outcome was grim (a rare form of metastatic cancer in her spine), the care there contrasted with the siloed approach of many other doctors and the small community hospital she was at prior to being transferred. Thank you for recommending Gawande's book - I'm downloading it now!
Hi Paula, I'm sorry to hear about your sister's situation but very glad that you were able to find such a good medical team. They exist, but they're like hidden gems we have to discover! We are fortunate to have the education and resources to be able to connect with them. I immediately think of the Mayo Clinic and Cleveland Clinic as well, but of course they have limited capacity. I think you will appreciate Gawande's work. In addition to talking about medical care, he also talks about the "continuum of care" in elder housing (independent living, assisted living, nursing care, etc.) and how some of the really good initial ideas have been medicalized and corporatized to the point where they defeat their initial purpose.
Our siloed medical system and experiences like your recent one provide so many of us with motivation to try and stay as healthy as possible. Years ago, a friend recommended I see a Neurotologist for tinnitus and benign positional vertigo. The cause of tinnitus is hard to pinpoint and can be idiopathic, but thankfully, I was able to get an accurate diagnosis and no longer have to deal with a maddening roar. This doctor has a number of clinics, and I see his PA annually to get my prescription renewed. What is interesting about this practice is that they use my 23 and Me genetic report to identify illnesses to which I might be prone, and refer to it during each consultation if I have any new concerns or complaints. The approach is novel and I leave learning something I didn’t know before. They don’t take insurance, so it is out of pocket. Yes, there are supplements they sell, too, so there is that; but I focus on what gives me the most benefit. Bottom line: the tinnitus fix keeps me coming back. The genetic information keeps me interested.
Thanks for sharing your experience with tinnitus. I'm really glad you've found a solution. And so interesting that they are using your information from 23 and Me == I haven't had any doctors mention that yet, but I suspect it will become more common. I completely agree about the desirability of staying healthy and out of doctors' offices as much as possible!
Really enjoyed this post, Hal! What struck me, while reading, was a recollection of speaking with you about the early days of your own scholarship into adoption. If memory serves, you quickly recognized some of the disciplinary silos of that time, and as a response, felt compelled to work with a cross-disciplinary perspective and to read broadly to address the critical issues. Your essay raises an important discussion of how we train people to expertise and how that might translate into both benefits and costs in practice. This seems to be something you may have been wrestling with for many years!
So true, Mike. I'll be attending the International Conference on Adoption Research in a few weeks, and will be raising that exact point! Your comment helped me see the clear connection between how that theme was reflected in my professional work as well as in the personal / medical realm discussed in my post. You're right -- it's a theme!!! Let us go forth and break down those siloes!
Thanks so much, Nancy! I've really been enjoying being able to write on these varied topics. In this post, I'm especially glad to spread the word about Gawande's approach to medicine. May we all have such wise souls in our corner!!
This is really nice Hal. I appreciate especially the emotional detail: the excitement for the specialist, and the anger, frustration, depression. Familiar feelings!!
Thanks Brian. I hear you!!! I am happy to report that the physical therapy seems to be helping. My PT cautioned that it would be a slow process ("like watching grass grow"), but that I'd see improvement by the end of the summer. So far, so good. That negative medical encounter certainly fueled me to action.
Hal, that encounter with the doctor was AWFUL! So sorry you had to endure that! I like all your ideas for constructively and reflectively moving forward! Great piece.
Thanks Rachel! We can do better...
I'm having a similar problem - a TMJ disorder, since it involves the jaw, it is foreign to my PCP. I am seeing a TMJ dentist who specializes in jaw issues, headaches, etc. who does not accept any health insurance (altho they send proof of my payment to my health ins, which I appreciate). When I speak to my health ins. company, they think I'm calling about dental insurance and I have to explain that it's not a dentist for teeth cleaning... Very frustrating! It's like trying to be my own PCP. I can't tell you how many times I have felt desperate and anger over this situation. I feel like the health system should not be up to us to figure things out, but they are!
So very true!! And we have the education and resources to advocate for ourselves and our loved ones. There are so many who just have to buckle under. I was so glad to hear that medical debt will no longer be considered when calculating one's credit score. But that's after the fact. Our system is so broken....
We have been colleagues and friends for a long time, dear Hal. We have written professional texts together and exchanged a few hundred written messages. But it is now, thanks to your contributions on Substack, that I am discovering that, in addition to many other good things, you are a very good writer. The constraints of professional writing and the brevity and informality of written conversations did not allow me to see it as clearly as these more personal texts. For example, in this last text based on a rather grim encounter with a super-specialist in heel and ankle, you manage to make an amusing description of a rather serious matter. On the other hand, beyond the surface, there are very deep things and very personal reflections that I thank you for making available to us.
Jesús Palacios
Thank you so much for this thoughtful comment. It has indeed been liberating to be able to write about a broader range of topics and in a less constrained style. I do enjoy writing and find that it helps me sort through my own thoughts. I did wonder whether anyone would care enough to read what I wrote, and I went back and forth for about a year before deciding to start. But one day in the car I was listening to a radio program where several writers were giving advice to writers who were starting out. A number of the new authors expressed that same concern about whether they had anything to say that the world would care about. One experienced writer said that he had also struggled with that, and finally decided that if even one person found what he wrote about to be useful (even just thought-provoking), that would be enough. So that helped me decide to proceed. I was a pretty active blogger in the early 2000s, but my posts were typically shorter and less personal. Once I moved to UMass, there was little time for such writing. I'm very happy to be writing in this new way, and I am also enjoying the discovery of other writers who are addressing similarly personal topics in very thoughtful ways. Thanks for joining me on my journey. (Although I know you have been there all along!)
Hal, I've been enjoying reading your beautifully written posts, and they all resonate with me. Over the past 6 months, I have been helping my sister navigate the medical system, and your experiences map onto ours. We did not find any continuity of care or concern for the whole person until we ended up at Cedars Sinai in Los Angeles where the amazing team of doctors there did everything possible to get a diagnosis. Although the outcome was grim (a rare form of metastatic cancer in her spine), the care there contrasted with the siloed approach of many other doctors and the small community hospital she was at prior to being transferred. Thank you for recommending Gawande's book - I'm downloading it now!
Hi Paula, I'm sorry to hear about your sister's situation but very glad that you were able to find such a good medical team. They exist, but they're like hidden gems we have to discover! We are fortunate to have the education and resources to be able to connect with them. I immediately think of the Mayo Clinic and Cleveland Clinic as well, but of course they have limited capacity. I think you will appreciate Gawande's work. In addition to talking about medical care, he also talks about the "continuum of care" in elder housing (independent living, assisted living, nursing care, etc.) and how some of the really good initial ideas have been medicalized and corporatized to the point where they defeat their initial purpose.
Our siloed medical system and experiences like your recent one provide so many of us with motivation to try and stay as healthy as possible. Years ago, a friend recommended I see a Neurotologist for tinnitus and benign positional vertigo. The cause of tinnitus is hard to pinpoint and can be idiopathic, but thankfully, I was able to get an accurate diagnosis and no longer have to deal with a maddening roar. This doctor has a number of clinics, and I see his PA annually to get my prescription renewed. What is interesting about this practice is that they use my 23 and Me genetic report to identify illnesses to which I might be prone, and refer to it during each consultation if I have any new concerns or complaints. The approach is novel and I leave learning something I didn’t know before. They don’t take insurance, so it is out of pocket. Yes, there are supplements they sell, too, so there is that; but I focus on what gives me the most benefit. Bottom line: the tinnitus fix keeps me coming back. The genetic information keeps me interested.
Thanks for sharing your experience with tinnitus. I'm really glad you've found a solution. And so interesting that they are using your information from 23 and Me == I haven't had any doctors mention that yet, but I suspect it will become more common. I completely agree about the desirability of staying healthy and out of doctors' offices as much as possible!
Really enjoyed this post, Hal! What struck me, while reading, was a recollection of speaking with you about the early days of your own scholarship into adoption. If memory serves, you quickly recognized some of the disciplinary silos of that time, and as a response, felt compelled to work with a cross-disciplinary perspective and to read broadly to address the critical issues. Your essay raises an important discussion of how we train people to expertise and how that might translate into both benefits and costs in practice. This seems to be something you may have been wrestling with for many years!
So true, Mike. I'll be attending the International Conference on Adoption Research in a few weeks, and will be raising that exact point! Your comment helped me see the clear connection between how that theme was reflected in my professional work as well as in the personal / medical realm discussed in my post. You're right -- it's a theme!!! Let us go forth and break down those siloes!
You are such a fabulous writer, Hal. Every piece is packed with info and meaningful insights. Bravo!
Thanks so much, Nancy! I've really been enjoying being able to write on these varied topics. In this post, I'm especially glad to spread the word about Gawande's approach to medicine. May we all have such wise souls in our corner!!