“What mistakes as patients could we be making that we should be aware of?”

I was recently asked this vital question. It is a brave one, a query most patients are constantly plagued by in their own thoughts but simultaneously reticent to consider. That is to be expected. After all, with how much we are facing each morning of every day, where exactly would we find energy to asses our own shortcomings, let alone put them into practice.

This is also a most difficult subject to consider mentally, emotionally, and physically.

The kids and I are studying biology this year more in depth than ever before. Of course, that means we’re reviewing the basics of scientific method, research, dependent and independent variables and, very importantly, the difference between what is “valid” and what is “workable.”

Simply put, a test which is “valid” within a lab, physical or mental, may be curious and offer some insight, but it is erroneous to assume that a valid result will also be workable: able to be reproduced outside of the lab with real world application.

As patients we often build up a set of beliefs around things which seem valid. This doctor is SUPPOSED to treat me. I have headaches so a headache specialist SHOULD fix me. I have GI symptoms, a GI is supposed to treat me. Typically, that would be the case, yes. But very little about EDS and connective tissue disorders is “typical.” So we struggle deeply when our sense of what is valid and factual, turn out to not be workable.

We can’t know what we don’t know. Neither can they.

The reality is that until medical EDUCATION catches up, a lot does ride on us. We can be mad about it, pained by it, and let it beat us down. But if we just keep using anger to shove our way through the system, it ends up with poor treatment, dangerous procedures, and bad medical notes that irrefutably damage future care.

It is not how we are “seen” or “heard” but how we are “interpreted” that matters.

Here are 5 thing you can consider in dealing with physicians and the medical system to positively impact how you may be interpreted in your search for help.

  • 1. Begin with lower expectations. This appointment isn’t going to be an emotional “attachment” that is fulfilling for you. This isn’t a friend (While, of course, we hope for positive relationship, some of the most friendly doctors are the WORST care providers).
  • 2. Rest. Take a whole day off ALL of this at least once a week. Make yourself take that break even if your brain fixates on it and tries to drive you to do something,
  • 3. Spend time learning what each specialist can actually do. Many patients walk into a specific doctor because they’ve been told that doctor will help with X or Q, or they believe that person is SUPPOSED to help for a variety of reasons. Both situations can end up blinding the patient to how the doctor works and communicates which will then create tension that leads to a bad appointment and poor treatment.
    • Research: What does a General GI actually do, vs. a motility specialist? And not just any GI, but the one you are seeing? What are their research interests and clinical expertise? What are their condition preferences as an individual vs. what other patients have said of them?
    • You can demand motility testing all you want, or demand help with mast cell issues from a GI. However, if they don’t have additional expertise and a personal interest in the impact of mast cell conditions on the GI tract, you won’t get help. Mast cell issues are historically the purview of the immunologists, no matter how much we think a neuro or gi or rheumy, or any other specialty SHOULD be involved.
  • 4. Be confident in moving on to someone new. You get the test you needed to rule in or rule out a thing, but the doc just isn’t getting the big picture. OR the doc acts confident and reassuring but then doesn’t actually DO the testing you know you need. Move on. Don’t panic. Find someone new.
  • 5. Learn your body. Leg numbness can come from sub luxating bones in the foot that are making your pelvis lopsided. Doctor’s can’t treat blind, and we patients often think we’re being very specific and cohesive when we are not. This hypothetical leg could be nerve damage, but if that gets ruled out then the patient gets stuck wondering if they were right or wrong, may be angry at the doctor, and start to come across as psychosomatic (per the physician’s medical training on psychosomatic issues).
    • The way to stay safe from this is your knowledge of your own biomechanics. If you KNOW how things move and are connected, how they are supposed to move/work and can use that contrast to articulate clearly to the physician, they are more likely to treat you better, give better options, be more personable. AND if they rule out the major stuff, you don’t need to panic because then you can say “Oh, gotcha. Ok, I need to work on bone alignment through my leg with osteopathic work or Bones for Life etc.”

In EDS the problem is rarely ever This or That. It’s often BOTH-AND, and the hard questions are “Which came first?” and “What can be done to improve it?”

If you know your body you can help a doctor discover the answer to number 1, AND know how to get help BEYOND the doctor when working on number 2.

In short, so many patients I meet, incredible, valiant men and women, have perfectly valid ideas about how to approach their medical care. What is needed, what is essential, are workable solutions that can be duplicated, repeated and used again and again and again. Until medical knowledge of our issues and conditions become workable for all of us.

Read more: Rant against physicians who won’t meet us halfway.


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