Medical Gaslighting and Me
Ever since I was a child, my life has been nothing but a comedy of medical errors. I am one of those people who would not catch the normal flu. Instead I'd land in the ER with something suddenly flaring up in my body. Like the appearance of a tumor, or an organ requiring fixing. Once treated, I would have a good laugh and forget about it. So, by 2020 I had undergone 3 surgeries, 2 laparoscopies, and more.
However, I had to reevaluate everything that I was perceiving about my body and medical history when neuromyelitis optica spectrum disorder (NMOSD) happened.
Dismissed and misdiagnosed
In June 2021, a small spot appeared in my left eye. I went to an ophthalmologist, who said it was nothing and gave me some drops and medicine, and I was sent home. 3 days and 2 different doctors later (and after being told it was stress), the spot turned into a line. I was given a dosage of methylprednisolone, and doctors said it would help me recover my eyesight. The line would be gone. But sadly by the 4th day, my left eye was gone - I was left partially blind. It was optic neuritis.
A month after this, a tingling sensation started in my spinal cord which would go down my leg. I went to a specialist, only to be told there was a spinal cord injury because I do a lot of running around the house and heavy lifting. I asked if an MRI or blood test was needed, but was refused and told it is a common thing in women my age.
Come the last week of October 2021, I was experiencing waves of pain in my chest. In the beginning, I was given painkillers. Ran from pillar to post with hospitals visited, and doctors informed me it was a gastric issue. I was told to start eating an oil-free diet.
A week later I was admitted to the ER and diagnosed with transverse myelitis of the spine, which left me paralyzed from the waist down. 5 days into the ICU, my reports stated I am AQP4 +ve. I had NMOSD.
Pain and testing
In April of 2023, pain waves would start in my lower right abdomen and radiate to my back. I went to the doctor again. They did a series of ultrasounds and said it was nothing. Might just be gastro (again). Until June 2023, I would be visiting 6 doctors.
The pain was going from bad to worse, and with all of my medical history, my gut was telling me something is wrong.
In June 2023, I got myself admitted to the ER with unbearable pain in my lower abdomen. I was put under observation for the next 48 hours. The pain would not subside. The doctors dismissed my plea for an MRI as the ultrasound showed nothing. However, I knew something was just not right and forced them to refer me for a MRCP (lower abdomen MRI) scan. And there it was a decaying gallbladder and so I underwent cholecystectomy.
This time was different. I had never questioned doctors. After losing my eye, things changed. When I read about medical gaslighting and reflected, it sounded like what had happened to me.
A gut feeling
My body had been giving signs all the time. Not just with NMOSD or the following cholecystectomy. It gave me signs earlier on as well with prior surgery of appendectomy, tumor removal, or an issue with my liver. There were symptoms. There were aches and pains, swelling, rashes on my skin, my overly bloated lower abdomen. Then there was my gut feeling something was wrong.
Some doctors would listen to me, but at the same time take my signs too lightly and dismiss them. They would tell me I was overthinking, overanalyzing my situation, and overreacting. I was told that being a woman my hormones might be acting up. I should go home and relax.
NMOSD and medical gaslighting
I speak from my experience and question: just because a doctor is in the medical profession, how can they possibly undermine what I am saying? How can they assume that I might be imagining things and play the blame game?
Medical gaslighting is not a joke. I am at a point where I ask myself, are the doctors delaying early detection of illness? As much as my doctors have helped me recover from NMOSD, I am scared. Instead of trust, I feel vulnerable.
For the sake of our health, there is a need to speak up when we feel unwell. To keep a record of our symptoms, flare-ups, and triggers. To have questions and cross-question, and to demand tests if needed without being hesitant.
We need to listen to our gut feeling.
Have you experienced medical gaslighting along your NMOSD journey? How do you help yourself?
Were you misdiagnosed, prior to being diagnosed with NMOSD?