We Must Take Our Autonomy Back

Those of you who know me, know that I have been on a many year health journey. I contracted Lyme and co-infections in childhood, and this and genetic predispositions led me to a whole host of problems for many years. What finally solved or is solving those problems was my own research and experimentation, and finally understanding from that research, how to successfully find medical help unlike the doctors I had seen all of my life.

In that process, it has become abundantly clear to me that along with the list of cultural disasters like Big Ag, Big Pharma, Big Banking, and the insurance industry, should also be added medical doctors and their training. It is based on the same flawed system of oversimplification and globalization and commodification of people that all the rest of those atrocities are.

But over the years, when I have tried to convince people that they needed to take back their own autonomy, and stop relying on these supposed experts, I usually get taken for a crazy person. So today, I am going to share with you a list of things actually said to me by actual MDs over the years, as a demonstration that it is in the edge cases, like me, that the real risks to trusting doctors become apparent, and that we’re all bananas to blindly assume that medical degree means really anything about their knowledge.

“It can’t possibly be Lyme.” This one has visited my life at least 6 times, when I was young enough that I had some naive belief that they had an actual basis for this prognosis. Turns out that upon DNA testing, it was Lyme. In truth, their denial of reality was the basis for their assessment. They chose not to believe factual science, so they could not diagnose it accurately.

“It’s probably colon cancer. I had a patient die of that recently.” This was told to me based on exactly zero testing, and based only on nebulous g.i. symptoms that could describe literally 30 disorders or diseases, all of them more likely than colon cancer at age 30 in a person with no family history.

“Reflux has no cause. All we can do is prescribe proton pump inhibitors.” Turns out that it has several causes, one of which is food allergies, which I had a history of. Also, proton pump inhibitors usually make matters worse, as there is often a low acid state, not a high acid state. This was well documented in medical journals at the time.

“That’s impossible.” Always a favorite. The first case of this one, that I remember, was in reference to my symptom of light sensitivity causing migraines. This is a well documented problem, often associated with SPD and Lyme among other problems. But it has been applied to me many times over the years as a response to my symptoms. It is both cruel and ridiculous as an answer.

“You blood work is fine, so you should see a psychiatrist.” This was the most basic of blood work, which rarely proves anything for people like me. It was often provided as advice by doctors who I had told I already saw a psychiatrist. That psychiatrist had already told me this was not in my head. Generally speaking the MD either refused to believe me, that I saw the psychiatrist, or that it was not in my head. Again, cruel and ridiculous.

“Doctors are crazy about this stuff. It is really very safe, but they are functioning on mythology, not science.” Told to me by the psychiatrist.

“I don’t believe in irritable bowel. Here is a list of gas producing foods you should stop eating to cure you.” Said by an incompetent g.i. specialist who believed we were all suffering too much cabbage and onions.

“It’s good that you came to me for gall bladder surgery. The other surgeons in town are too worried about messing up their numbers to do laproscopic surgery on fat women, so you’d spend months healing with anyone else.”

“It’s just a cold” expressed while angrily refusing to let me speak, in response to lyme, co-infections, severe sinus infection and symptoms of a cranial leak in someone with a connective tissue disorder.

“Well, if doctors hadn’t ignored your comments about your feet, you probably would have orthotics already, and probably wouldn’t have broken your ankle.”

“Well, we can’t do surgery on you if we can’t get the IV in…” expressed in a tone like I am just being a difficult pain in the butt, because they are failing utterly to IV me successfully.

“Just take $over-the-counter-remedy.” I get this one no matter how often or how recently I have either mentioned, or handed them the sheet of paper that tells them what over the counter remedies are totally off limits, because of allergies, autoimmune reactions, or genetic predisposition to problems with that drug. I have lost count of how many times this has happened, and it amazes me there are not millions of elderly and memory care patients dead of it yearly. Perhaps there are, and I just can’t tell.

“You need surgery for your torn meniscus.” Said doctor operated, only he’d misdiagnosed the problem, and the surgery ended up making the bone pain and tendonitis from Lyme disease much worse by changing the ergonomics of my knee in a way that added more force to the swollen area. Following doctor took one look at the MRI and said “Yeah, it’s really obvious, but he missed it.”

“There is no way your bloat will matter to your belly button hernia. As long as you don’t keep gaining weight, the repair will hold.” It promptly tore right back out after surgery due to the bloat issues they failed to address.

“That rash is dermatitis herpeteformis. Here is some oatmeal bath to soak in and an ointment. No one knows why it happens. For some people it helps to eat less wheat.” This by a dermatologist, many years after it was standard medical knowledge that this rash IS celiac disease. No other information about celiac was provided, leading to 15 years more suffering before again being diagnosed with celiac disease.

“All of your problems would be solved if you would just exercise daily.” Said by so many of them in one form or another that it was hard to believe them all wrong. Only they were just increasing my adrenal fatigue and making me sicker.

“All of this is really just that you’re overweight.” Said by a long list of jerks with little compassion and even less sense. Turns out the weight is a symptom, not a cause, and the dieting and working out were making matters worse.

And this is just a random sampling off the top of my head. Honorable mention goes to a couple of nurses. One asked me “how do you live?” when I refused several drugs in a row that I react badly to, because she kept deciding on solutions contradicted by my allergy list in the chart in front of her. Another gem was the woman who crankily informed me that I was on all the pain killers she could give me, and I should just stop screaming and crying. Eventually my spouse threw a tantrum and demanded the doctor, who split the cast and relieved the screaming pain.

I assure you that this random selection of doctors all across a Metro area, picked by all sorts of means, is not somehow indicative of an unusual subset. This sort of idiotic nonsense has come from literally all but two doctors I have ever seen out of a long list of doctors over the years. But since most of you only see them for strep when your kids are sick, or maybe to refill a prescription, or when you break a bone, you are not aware of just how consistently bad their advice is. You do not often trigger their edge cases, so you cannot evaluate what they do when it’s not an obvious or simple answer.

Just about everything doctors have told me in over 40 years of living has been at least partially wrong according to medical journals at the time, or indicative of the industry being bananas. The minute something important is wrong with you, you will get bad advice, too, but you won’t have the visibility into the chronic problem to understand that their proclamations of what is or isn’t wrong, or how to treat it are lost in the weeds.

So, I understand that I probably seem like a crazy lady to you for not trusting “experts” but the thing is that I have read their research journals myself, and I know they are largely lying and functioning on old information, and making emotional decisions when they hit something unusual. So I treat them with exactly the respect they have earned, which is to say a big heaping pile of doubt in their general competence.

You would be wise to keep asking “why” when they come to $5 words as diagnosis, or scans, but no real cause. And don’t believe them when you finally back them into a “nobody knows” answer. You’ve just discovered a fraud in most cases. You would be wise to assume most of them are clueless and do a lot of your own research before accepting their quick fix. And even when they do get a diagnosis right, chances are decent you shouldn’t stop there, if it’s chronic illness. Hell, half the time they’re just wrong about the diagnosis in the first place. And while you can certainly find incompetence anywhere, your likely success rate is higher if you go find yourself a functional medical doctor to work with. They may not always get it right, but they’re at least trying to really figure it out, rather than functioning on pure ego, in most cases.

Good luck out there, and don’t take your autonomy for granted. Some day your skepticism may save your life. It has mine, many times over.