Medical Gaslighting: When your doctor tries to make you feel crazy.

Health

Jun 10

A little bit of context regarding Medical Gaslighting.

I first wrote about medical gaslighting in an article that was published by Blasting News US. The article, entitled, Women do experience severe and chronic pain, allows readers to experience just how difficult and crazy-making it can be to receive treatment for chronic pain and pain-related illnesses as a woman in the world of Western medicine. I define medical gaslighting in the excerpt below:

“If gaslighting is manipulating someone into questioning their own sanity, medical gaslighting is manipulating a patient into thinking that they are exaggerating their own condition, causing a patient more and prolonged pain, putting their well-being or even their lives at risk. Both anecdotal and legal studies suggest that the mistreatment and neglect of female patients reporting pain to medical professionals is not the exception, but the rule. It has got to stop.”

— Kelly Mendenhall

My latest health update.

It’s been a while since I posted a detailed health update. I think there are a few reasons for that. One is simply that I wasn’t really sure how to update everyone. Since my implant surgery in December 2018 I have been navigating the emotions of getting used to my new body and simultaneously experiencing the same challenges that I was experiencing before my surgery. My quality of life has improved in that my pain is generally more manageable, but there were a lot of other symptoms that were showing up more dominantly once the nerve pain in my leg died down some.

In mid-March I saw my surgeon (Dr. Unicorn) for a final surgical follow-up appointment. When I told him that I was still experiencing the severe swelling in my left leg, inability to tell my leg and foot what to do, tripping over my left foot often, etc. he said that it was time I go back to see the neurologist who did my EMG study in 2018.

The short version of that story is that the neurologist confirmed all of the symptoms that previous doctors and specialists had denied, accused me of inventing, and ignored. These include foot drop, numbness and myelopathy, hyper-reflexivity, and pain in my neck and mid-back. as well as complete loss of balance. He ordered a full spinal MRI immediately.

I received the results of my cervical and thoracic MRI scans on Thursday, June 6.

The MRI results.

I have a prominent bulge at my C5 and C6 vertebrae (neck,)
A prominent bulge at my T12 and L1 vertebrae (top of my low back) and a suspected perineural cyst in my thoracic spine (mid back,) and
There is spinal cord deformation at the T12 and L1 vertebrae but I don’t know if that is from the cyst, the bulge, or a combination of the two.

I have a thoracic MRI with IV contrast scheduled for this Friday, June 14 in the evening. I will be following up with the neurosurgeon I saw last year for consultation and treatment plan. I may have 1-3 surgeries in my future, depending on what they deem surgically necessary. Surgeons do not operate on different areas of the spine simultaneously, so if there will be multiple surgeries I will have one, recover and rehabilitate for some time, and then have another, and so on.

When I got the results, I got pissed.

Don’t get me wrong, there is a huge part of me that feels relieved, validated, and celebratory. I finally have answers and proof. But given all of the torture I’ve endured through the past two years — three failed epidural spinal injections, 3 trigger point injections, 3 piriformis muscle injections, 1 SI Joint injection, the EMG study, a myelogram CT study, temporary and then permanent spinal cord stimulator implants, not to mention two years of physical rehabilitation and therapy — I think being pissed off is allowable. Oh, there was also the serotonin syndrome and relapses with my PTSD and MDD.

All weekend I’ve been trying to figure out how to update my health blog and also how to process the anger I feel toward the doctors (especially my Primary Care Doctor) who treated me so poorly throughout the past two years. I sat down to write the blog and to update my “Kelly’s Book Launch Master Checklist” document for my PR folks, and instead found myself writing a letter to my doctor.

After talking briefly with a female friend who is also a Spoonie and has also experienced medical gaslighting, I decided I would publish the letter I wrote to my doctor, here. I have redacted the names of the medical professionals and the facility I referenced in the letter in an effort to avoid being sued. Otherwise, this is the letter. I hope that publishing it helps other people feel less alone in their experiences and suffering. For the first 10 months or so of my two-year battle I often felt very isolated, alienated, and hopeless. I don’t want anyone else to feel that way if I can help in any way.

Dear, Dr. L:

It was June 20, 2017, when I was last able to work. I couldn't even make it a full day. I came to your office in tears and you filled out my FMLA paperwork, and I thought you were on my side. Little did I know just how NOT on my side you would be.

It is June 10, 2019, and I FINALLY have proof that I am not crazy, lazy, hysterical, or delusional, in spite of how I've been treated by you, Dr. S., Dr. K., your former nursing staff, the emergency room staff at <hospital>, and more. I FINALLY got a full spinal MRI, of which I was refused by you, Dr. S., and Dr. Q. at <medical facility> each time I requested one.

For two years you have refused to believe and accept that I could possibly know better than you or the specialists that something was seriously wrong with my body.

You have refused to complete paperwork regarding my medical disability, or done so sloppily and incorrectly making it utterly useless. You have told me that you cannot "appreciate" a difference in my legs when I complain of the swelling and pain.

So, I have attached MRI reports as well as a photo of what my leg looks like if I dare wear socks that are not compression socks for even half a day. Tell me, can you appreciate that now, Doctor? Thank God I finally saw a doctor who actually gave a shit, did a thorough neurological exam, confirmed my foot drop, hyper-reflexivity, numbness, and myelopathy on my left side, and ordered a full spinal MRI.

If I sound pissed off, it's because I am pissed off. I deserved better treatment than what I have gotten from you and a myriad of specialists throughout my two-year ordeal. YOU DOCTORS are responsible for triggering my full-blown PTSD and MDD relapse. As if the tortuous and mind-bending pain wasn't enough, I had to endure constantly being questioned and challenged by the very people that were supposed to help me.

You wrote prescriptions for medications that never should have been combined, leading me to wind up in the ER with serotonin syndrome, only to have the doctors challenge me and accuse me of taking synthetic marijuana or other street drugs that caused my symptoms. Then I got to go through the absolute hell on earth of four weeks of withdrawals from those medications.

You challenged my long-term disability insurance paperwork which led to a legal battle that spanned 1.5 years. You most recently refused to complete the disability paperwork for my student loans because, "Well, you drove yourself here and you're ambulatory." Guess what? The definition of Medically Disabled isn't, "She can drive herself 11 miles to a fucking doctor's appointment, so she must be fine."

Who the hell is going to hire the girl who can't sit up more than three hours a day? Who can't lift, bend, or stoop regularly? Whose foot falls out from under her with no warning, and since it's numb, she can't feel it and trips over it? Every single time I almost fall or fall, I have to worry about whether or not I have re-injured myself or done more damage. And don't you dare even think about saying, "But I filled out that paperwork," because you signed it but failed to date it, you answered questions with contradictory answers, and failed to put your medical license number on the form. It was rendered utterly useless by your incompetence, and given our history, I can't help but feel like you did that shit on purpose.

Why have I stayed your patient for so long, in spite of the piss-poor treatment I've received? Because I didn't want to look like I was doctor shopping while in the middle of pursuing social security disability benefits. Thankfully, my lawyer says I needn't be concerned with that any further, and that you're clearly useless to me as a doctor so I may as well go ahead and make the switch.

You took an oath when you became a doctor to do no harm. Spoiler alert: YOU HAVE DONE HARM. You failed to live up to that oath.

Sincerely and with great anger and disdain for your existence,

Kelly Mendenhall