In my work, I often hear frustration from physicians about how patients communicate. And I can sympathize, of course! When we’re trying to solve a complex problem for someone it is difficult to get the information you need in the short time typically allowed! And if they are having trouble putting thoughts together, relating symptoms clearly, well. Why try? It is a minefield of issues, truly. BUT. but…

Monkey see, monkey do is a pidgin-style saying that was already called an “old saying” in 1900. The saying refers to the learning of a process without an understanding of why it works. Another definition implies the act of imitation, usually with limited knowledge and/or concern for the consequences.

When the paradigm of the medical community is “We know best”, when it’s “you didn’t go to medical school, you’re crazy for thinking you have X, or Q condition.” When the approach of the doctors we need is to label our brain fog, pain and anxiety as psychosomatic symptoms and treat us like we are less than human, tell me. Where is the space to mutually learn to communicate any better?

The weights just keep being added to the patient load, headless of capacity, ability, support outside of life, or internally for what it means to accept, cope and live with a condition like EDS and adjacent issues: Fibro, Autoimmune disorders. “Well, you’re body is eating you, basically, but don’t worry. We’ll give you these medications that will make you miserable and not able to live a full life but trust us and don’t complain or we’ll make you see a psychiatrist before we treat you any further.”

I am not exaggerating. This is what we are told!

And it’s not hard to find the reasons. Especially as women. After all, the science say’s we are more likely to have mental health disorders right?

The research for women’s health is soo abysmally tragic that we are just here, sitting, while the doctors simply imitate what they “know” to be correct with ultimately very little knowledge the origins of our mental and physical health manifestations, and very little concern for the consequences of misdiagnoses and mistreatment.

But the issue here is much deeper than academia and research initiatives failing to keep pace with recent shifts in society. I’m a big believer that in order to solve any problem, we need to understand the foundational issues causing the problem in the first place. Only then can we start to create real change and better outcomes. 

So, first and foremost: Why is women’s health so under-researched?

You don’t know what you don’t know.

We, the patients, can tell you what you don’t know. Will it be precisely medically sound? Of course not. But as long as the physicians maintain un-relational walls between themselves and their patients and refuse to build a NEW PARADIGM for managing chronic illness and women’s health, we will continue to not be able to communicate with you.

As an advocate, here are three things I need from the doctors in my life and in my patients lives.

  1. I need you to TALK to me. To tell me your side of the story and struggle, and THEN listen while I tell you ours. Reciprocal communication is the only way.
  2. Stop making this about you and your education, credentials and experience and how you think I might abuse the information if I had it. Information is power. If physicians insist that they get to keep the power instead of us, we will persistently not be able to reach healing we so desperately need.
  3. Get involved in educating the community. I would LOVE to spend 1 hour with you in an interview and then turn your experience, knowledge and solid advice into readable, accessible education materials for our community. You might be surprised!

Bottom line:

I can’t help patients communicate with YOU, if I don’t know how YOU communicate!

Monkey say, Monkey do refers to the learning of a process without an understanding of why it works. That’s not what I do. And that’s not what you, dear physicians, want to do either is it?

Community is everything. So come, let’s see what we can do when we work together.