Why your hypermobility care has to be holistic

Partial care delivers partial and temporary results, keeping you in a vicious cycle of symptoms

Your body is not the problem. The healthcare system is.


If you've started to feel like the list of doctors you've seen is ever growing without a commensurate improvement in how you feel and function, you're not alone. Most of my new patients tell a story of going from provider to provider, accumulating a long list of medications, while still being symptomatic and looking for answers. "Am I going to feel like this forever?" is a common question. "Are my kids going to suffer like me?" is another.


Meanwhile, at the doctor's office patients are, in an elegant but unpleasant display of projection, more often than not made to feel like they are the reason they don't feel better yet. Any question the specialist can't answer tends to be brushed away with "you'd need to see another specialist for that". Which you do, only to experience the same problem there.


I've previously written about the importance of creating an Owner's Manual of sorts, by gradually learning to understand your individual body in greater detail. One obvious reason for doing this is that even when we have the same diagnosis we are all unique. This calls for a great degree of individualization among people, and even for the same person from one point in time to another.


However, the greater problem, and the reason for the inevitable dissatisfaction and lack of results, is hiding in plain sight: 


The human body is a marvel of interconnected and interdependent systems. Any attempt to separate one system from the others is an artificial, untrue model of reality. The body therefore has to be viewed and treated holistically, with the understanding of how the whole affects the part, and how the part affects the whole.


The healthcare system is a system of independent specialists, who are careful not to overlap, don't typically talk to one another, and who don't even publish in, or read, the same journals. It therefore can't, by definition, address the human body and mind holistically.

​Problem is, the human body doesn't divide itself into neat lanes accordingly. 

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This is obviously not a very good match with reality, but it is unfortunately more lucrative than the better model (the radical notion of seeing people as whole, interconnected beings), and patients are the ones suffering the consequences.


Sometimes this sprouts new specialities, such as the somewhat recent field of psychoneuroimmunology (and I don't envy these guys having to introduce themselves with a term that is, shall we say, a bit of a mouthful) but most of the time specialists are like the proverbial blind men holding parts of the elephant without understanding the whole animal.






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Interconnected systems


How does this affect you? While hypermobility is short for joint hypermobility , EDS and HSD actually affect all collagen containing tissues, and that is another way of saying the whole body. 


The gastrointestinal tract is a prime example of this. It is essentially a long tube passing through the body, and when this tube is made from looser tissue, the function can, and very often does, suffer. Motility -- the speed at which food passes through the tube -- slows down. This may give unhelpful critters (bacteria from the microbiome in your large intestine, where they belong),  time to set up shop in the small intestine, where they don't belong. This is referred to as small intestine bacterial overgrowth (SIBO) and comes with a host of potential symptoms; bloating, constipation or diarrhea, fatigue, poor nutrient absorption, autoimmune disease and low thyroid hormone levels (which slows down motility even more and contributes to mood disorders), inflammation, anxiety, depression, low energy, muscle tightness poor tolerance of food, and more.


In our "healthcare" system no one specialist treats all of these symptoms. The anxiety and depression are the responsibility of psychiatrists, psychologists and psychotherapists. Autoimmune disease is managed by rheumatologists, allergies by immunologists, the pain by rheumatologists or physiatrists, gastrointestinal symptoms by gastroenterologists and hypothyroidism by endocrinologists. 


Can't you just see each one holding his/her part of the elephant, blind to the nature of the whole? 


Which specialist you'd end up with would depend on which symptom you sought help for first, and this person would be more likely than not to be unaware of the connection of that symptom to SIBO, and that of SIBO to your hypermobility. 


The tragedy is that under this system the connections between organs and symptoms are missed, and so is the hypermobility, which connects and is the root of it all.


So, no matter what your main symptom is, be it anxiety, pain, bloating or anything else, it will be diagnosed and addressed in a way that can't cure you, because the intervention is focused only on a small part of you, neither taking the underlying reason nor the whole person into account. If you suffer from  anxiety due to hypermobility, you may benefit from psychotherapy or drugs, sure, but what about the other factors causing or contributing to it, like poor proprioception, poor gut health, POTS, a sleep disorder, musculoskeletal pain and more?


What about your bloating and constipation? Has your gastroenterologist ever addressed your loose connective tissue, your low thyroid hormone levels, your stress, heck, even your diet?
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Sooo..... now what?

When I talk about the problem, the listener often angrily demands to know where s/he can find "this magical unicorn doctor", the person who can see "the whole elephant", and will treat it holistically.


My message isn't "find a better medical doctor". We've already discussed how the healthcare system as it stands unfortunately can't function holistically. There are few unicorns in modern-day healthcare. My message is this:


Once you understand that our bodies and minds function as a whole, not in isolated bits and pieces, you become empowered to create change.  


No more looking for that magical MD who will save you with one magical prescription. For hypermobility, that doesn't exist. Most of our symptoms can't be cured with a pill. We do not need to forego RX medication, but it is only part of the holistic solution. Most of what can be done for a hypermobile body can, and should, be done by the individual him/herself, through lasting changes and ongoing work. Expert help is often needed, but make sure to be the "case manager'' who keeps an eye on the big picture, pulls it together, and makes the individual experts aware of the whole and the connections within it. 


The healthcare providers that you want in your court are the ones that can hold more than the ear or the tail of the elephant. These (unfortunately rare) providers are curious, intelligent learners who understand health more broadly and are happy to teach you what they know in order to help you be as empowered and self-sufficient as possible. They are sometimes trained in functional medicine, but all healthcare professionals should take a functional and holistic perspective and understand more than their assigned body part. When you find the good ones, hold on to them, and learn from them, but also learn by studying yourself, what helps you get better, what your body needs. Learn by reading books, articles and watching videos. You have a complicated body that will thrive when it receives the care it needs: an ongoing, lifelong practice of specific exercise, careful dietary and supplementation, good sleep habits, daily calming practices, a purpose other than ourselves, and more. 


Most of us underestimate how well we can feel, because we haven't known how to get there, and have instead been led astray by the false promise of bit-by-bit- healthcare. 


We've even been told there's nothing more to be done. I hope you didn't believe them when they told you that, because when we pull it all together the interconnected nature of the body's systems works in our favor: Doing  better in one part gives the whole a better chance, and most of us can feel better than we expect.



        Checklist of signs that point to a practitioner with the ability to see a bigger  picture:

• Interested in your medical history as well as your social history.
• Interested in your lifestyle habits; diet, sleep, supplementation, meditation/calming practices, exercise habits, stressors and responsibilities.
• Grasps your level of understanding of the topic and ability to learn; neither patronizes, nor speaks over your head.
• Is open to questions, can take being questioned, listens to your preferences and concerns.
• Is not barricaded and unavailable behind wall of unhelpful staff. Sometimes you do need to communicate between appointments and support staff know only so much.
• Can modify the treatment to fit your unique needs. Hypermobile patients often need a very different approach from the average patient.