Writing The Owner's Manual For Your Hypermobile Body

Creating a much - needed roadmap to better health for your unique body


Houston, we have a problem
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Does it ever feel like you wish you had been given an Owner’s Manual to your hypermobile body? After all, it often seems like the Regular People’s Owner’s Manual, i.e. what usually works for other people, does not apply to you.
Unlike organ-specific ailments that are managed by medical doctors and other healthcare professionals specialized in them, joint hypermobility-related syndromes like EDS/HSD seem not to have the best PR department. Even though they affect most organs in the body, they do not have their own medical or other specialty. How is that even fair? This can leave the hypermobile individual without a good source of information about the condition and how best to treat it. 

To add insult to injury, healthcare professionals in general aren’t being taught much at all about hypermobility-related conditions, and are therefore usually not able to guide you in how to best care for your body. Instead, you’ll be receiving a whole lot of “normal people” care, and this may not always be a good match for you. Worse yet, much of the necessary help and information is not even covered by health insurance.


But I’ve had  lots of tests and my symptoms are managed, sort of..
Within what is covered, you may be getting  prescriptions and lots of tests and treatments, but are they really tailored to your particular body? Are they really helping you get better, function better and feel better? Usually not. At best, they may help you suffer a little less from your symptoms, while the underlying issue remains unchanged. Not the best deal in town, if you ask me.

Whether we like it or not, having EDS or HSD (I usually think of hypermobility on a continuum) therefore requires a much more active stance. Unlike some diagnoses where it may be a bit more safe to kick back and rely on what the good doctor says, EDS/HSD patients who become “patient experts” tend to fare the best, whereas those who seek out one doctor after another, building an ever-growing list of orange Rx bottles on their nightstand without a proportionate alleviation of symptoms, often tend to get stuck in a rut, many gradually even doing worse instead of better. 

This downhill slide is fortunately not necessary. Our bodies just need the right kind of care instead of the run-of-the-mill treatment. Kind of like your goldfish needs goldfish food, and not birdseed.


"Writing" your owner’s manual (no, not literally, unless of course you're into taking lots of notes)

So what would the process of “writing your owner’s manual” look like, and what does it even mean? And more importantly, how can it help you?


What I mean by this expression (and if you think I should have thought of a better term, create your own name for it and let me know what you call it!) is that you and your body are unique, and different from the average body, and you need specific “instructions for use” (nutrition, exercise, lifestyle etc). By learning as much as you can about hypermobility disorders in general, and observing your own unique body’s reactions in particular, you can start to understand and prevent (or better yet, get out of!) problem spots, and start to build on improved health. Instead of staying stuck, with only short term relief options as your go-to for dealing with life in a hypermobile body, you learn to understand the why behind your symptoms, and can go to work on eliminating the problem. Knowing your body can also help you avoid the common pitfalls of being prescribed forms of treatment that actually make you feel worse, instead of better.


Here are some examples:

• You learn to understand exactly why hypermobile bodies are prone to joint problems, muscular tightness etc, and when your MD suggests you just lose some weight and get a personal trainer, you disappoint him and tell him nope, that may work for his/her other patients, but you need a more specialized approach. You seek out an experienced practitioner who specializes in the approach you need.

 

• You understand that POTS (postural orthostatic tachycardia syndrome) has a lot to do with your nervous system and your blood volume, and when you’re given Rx medication to suppress your body’s symptoms of POTS, you optimize nutrition and lifestyle before you add drugs, or in order to get the most out of the prescribed drug.

 

• You learn that EDS/HSD can contribute to anxiety in many ways, and when your busy practitioner sends you off with anti-anxiety medication or advises years of therapy, you also know to look elsewhere. Mental healthcare can be very useful, but you want to make sure you’re barking up the right tree (or all the relevant trees, as the case may be). Maybe your main issue is poor proprioception and a wildly fluctuating ANS (autonomic nervous system) driving your adrenaline levels up and down? Maybe there's a nutritional glitch (or two)? If so, this issue needs to be addressed before psychotherapy can do its part -- if you end up needing it a all.

Your physical therapy sessions should also be an ongoing learning experience that helps you write your mental owner's manual. In order to get the most out of this opportunity, make sure top stay curious. A good healthcare professional welcomes questions! S/he may even love the opportunity to pontificate on a favorite topic.


An ever- growing manual

By now I hope you’re starting to see how useful an individualized approach can be. This approach sees you as who you actually are and can help you feel better in your body on oh, so many levels.


You can’t become an expert overnight, nor do you need to, but by continually seeking information from a variety of sources, and having in-depth conversations with knowledgeable providers, you can over time write your manual, page by page, and lead a more empowered – and hopefully easier and more enjoyable – life in your hypermobile body! And keep sticking it to rude doctors. (Keep the nice ones, though!)