Medical Gaslighting: Why I Had To Become My Own Doctor

Why do doctors go to medical school? Apparently, so I could diagnose myself.

Let me tell you what doctors spend at least eight years learning:

• Fat people just need to lose weight and all their problems will be solved.
• Young people cannot possibly have chronic pain or serious health issues.
• What works for most people must therefore work for all people.

That’s it. Hey! I guess you’re a doctor now too. Congratulations! *rolls eyes*

Our healthcare system is designed to solve single-symptom problems on a corporate assembly line. But human beings — especially neurospicy, chronically ill human beings — don’t work that way. We are a beautiful, complex tapestry. Conditions like hEDS, POTS, and MCAS weave across your entire body, affecting your brain, your joints, your sensory processing, and your hormones all at once.

But doctors? They only ever look at one single thread at a time, try to “solve” it in a fifteen-minute appointment, and call it a day. Can’t figure out it in 15 minutes? In comes medical gaslighting; “you just need to lose weight”, “you’re too young to have this many problems”, and my personal favorite, “don’t worry your pretty little head about it”. No, seriously, a doctor actually said that to me.

The Time I Forgot My Own Kids

About six years ago, I started having memory issues. At first, I’d forget where I was going or space out and miss my exit. Then I was getting lost on roads I drove every day. And not occasionally. Daily. It only lasted a minute or two, then I’d remember. I mentioned it to my primary care doctor. A few times, actually. He basically patted my head and sent me on my way.

Then it rapidly worsened.

One day I went several miles past my exit — I only noticed because the highway literally ended! The scariest one? I was on my way to pick up my girls from school. A school they had attended for two years, mind you. Taking the exact same route I did twice a day, every day. Suddenly, I had no idea where I was. I didn’t recognize the road I was on. Even the street signs were no help. I had to open my GPS to find my way to my own kids’ school. 

I started keeping my GPS running no matter where I was going, I put sticky notes on my dash in case I forgot where I was headed mid-drive, and I finally insisted on seeing a neurologist. 

The first one looked at my A1C of 5.7 — which is fabulous, by the way — told me it was way too high and I was fat. That I needed to get my (perfectly controlled) diabetes under control and lose weight. Huh… I haven’t heard of an epidemic of fat people aimlessly wandering highways. You’d think that’d be on the news.

The second neurologist actually did her job. She got CTs of my brain and neck, asked thorough questions, reviewed my medications, and actually looked at me. She determined it was pseudodementia caused by undertreated MDD (Major Depressive Disorder). My psychiatrist adjusted my treatment and just like that, I stopped getting lost.

Same problem. Two completely different doctors. One looked at me and decided he already knew the answer. One actually did her job.

Sadly, the neurologist story is not the outlier — it’s a Tuesday. Competent, caring doctors are the outlier. I have literally had a doctor tell me I was too young to be in any real pain, so I shouldn’t worry my “pretty little head about it.” What?!

The ER Nightmare (And the Infection Cascade)

And the ER… What a nightmare.

Because I am in so much pain every single day, I don’t notice when I get a UTI — and I seem to get them frequently. Unless a new pain is louder than my everyday baseline pain, it doesn’t exist to my brain. 

Well, one day I noticed I was peeing quarter-sized blood clots and had severe pain under my rib. Well, that can’t be good, so off to the ER I went. By the time I got there, the pain was a 10. Unfortunately, I guess I wasn’t dramatic enough for them to take me seriously. See, due to 40 years of heavy autistic masking, the more pain I’m in, the less I show on the outside. I may have silent tears, but otherwise, nothing. No screaming, not even moaning. I can do anything anybody needs me to do even at a level 10. So I got into every agonizing position they wanted for the X-rays, tears streaming down my face. 

They told me it was a UTI and a “mild” kidney infection, gave me some meds, and sent me home. It was not mild. My primary doctor was livid they didn’t hospitalize me. I had to drive to her office every single day just to get antibiotic and Toradol injections.

I ended up back in that same ER four more times that first week. The untreated infection started cascading through my system, and during one visit, I experienced adrenaline dumping — a sudden, violent flood of adrenaline. My heart rate was over 140 while sitting down, my entire body was shaking, I was having trouble breathing, and talking was nearly impossible. I was freezing, so I clamped my jacket closed with my hands. 

When the ambulance arrived, the EMTs asked me to let go of my jacket so they could hook up their gear. I couldn’t. I had absolutely no motor control over my hands. By this point, I was squeezing my jacket so hard that it physically hurt, and I wanted to let go. I told them I couldn’t. (Not having control of your own body is terrifying, by the way). A few of the EMTs actually laughed. They started talking to each other about me like I wasn’t even there. They spoke to me like I was being an overly dramatic child: “It’s okay. All you have to do is let go. Just open your hands.” If I could have done that, I would have fucking done it. When I got to the ER, I was told once again this was mild and I would be absolutely fine.

I have been in the ER so many times due to my health issues, and not a single visit has ever been a helpful experience. It got to the point where my blood pressure dropped to 66/32 because I had the audacity to put away groceries and go to a doctor’s appointment in the same day, and I still refused to go to the hospital. What’s the point? I chugged electrolytes and hoped for the best.

The DIY Diagnoses: hEDS, POTS, & MCAS

I had to figure out I had hEDS — hypermobile Ehlers-Danlos syndrome — myself. When I finally brought the research to my rheumatologist, he said, “Yep, that makes sense.” When I asked him to add it to my medical chart, he laughed. Actually laughed. “Why? There’s no treatment.”

I had to explain to a literal medical doctor that it’s genetic. That I have daughters. That having it documented would make it easier for them to get diagnosed if they ever needed to be. That it would help connect the dots for my other comorbid conditions — two of which I also have: MCAS and POTS. He added it. Still laughing.

And trying to get my POTS diagnosis? My body hates gravity. I cannot tell you how many cardiologists barely spoke to me before deciding I was just “out of shape.” “Lose weight,” they said. “It’ll resolve itself.” So I did. I lost nearly 100 pounds. And guess what? I still nearly fainted every single time I stood up. My heart still raced like I was running a marathon while I was just standing at the sink. I brought research and documentation to doctor after doctor, and I was told no, repeatedly, for seven years.

The second-to-last cardiologist I saw was supposed to be a POTS specialist. He gave me the tilt table test I had been begging for, and I was hopeful this was finally the one who would listen. Spoiler: I was wrong. I didn’t pass out in the first part but did in the second, so he declared it “inconclusive.” The fact that consuming 200% more salt than the average Joe had dramatically improved my symptoms — a well-documented POTS treatment — was deemed completely irrelevant. He told me to lose weight. Seriously?! I eventually got the diagnosis, but it was a bitch and a half.

I diagnosed myself with MCAS — mast cell activation syndrome — as well. Basically, my body is allergic to everything and yet nothing all at the same time. For years, allergists ignored my random reactions. I was often sick after I ate, I would break out in hives, and I had a chronically runny nose pretty much every day of my life. I suspected a gluten intolerance, but was told there was no way that was the problem. Then I learned about MCAS and it clicked.

In this instance, I got lucky. I stumbled onto a fabulous allergist who actually knew what MCAS was and confirmed my diagnosis just by looking at me — I was covered in red, hot, splotchy patches inside an air-conditioned building because I was overheated.

The Cost of Being Ignored

I was finally formally diagnosed with EDS at the end of 2024, but I have had symptoms my entire life. I have been seeing doctors for decades, telling them about my pain. If just one of those doctors had listened — really listened — I might have known before I had children. I could have made an informed choice about whether to risk passing a painful genetic condition down to my girls. It’s a 50/50 coin flip. 

Instead, nobody gave me that chance. Today, I am about three steps away from being bedridden. There are days I can’t get out of bed, days I have so little energy I can barely talk. I use a cane because my balance is shot. I have to order my groceries because walking a store drains my entire battery. This could be my girls’ futures. I deserved to make that choice with full information, and nobody gave me that chance.

I think about that a lot. A body that was trying to tell everyone something was wrong for decades while everyone looked at me and decided they already knew the answer based on my appearance or my age. Would it be different if someone had listened? I’ll never know. But I think about the field biologist I wanted to be. I think about my girls and what their future might look like. I think about all the years of progressive damage that accumulated while doctor after doctor told me to lose weight and sent me home. And I wonder.

*sigh* Doctors suck.

Sadly, I know I’m not alone in this experience. Have you ever had to become your own doctor? Comment below and let’s commiserate together.

Remember, folks, whatever you can do today is enough.