AxSpa and Medical Gaslighting
I had been struggling for a few years when I finally had enough of not having some sort of solution or treatment for, what I now know is AxSpA. I had all over body pain, awful sensations in my feet, fatigue that left me feeling like I was barely alive. It seemed like no matter how I expressed myself or what new symptoms popped up it was all “nothing” many of the doctors I had seen were extremely dismissive, with both my AxSpA and my other diagnoses.
I was hoping for answers, but got none
I finally got a family doctor who was kind, compassionate, and willing to run some tests and send me to a rheumatologist. But even with her proactive care plan, I still didn't fully understand what was going on, or what a rheumatologist even was. I showed up to that appointment hoping for some answers, or at least additional testing, and after a quick glance over, and no obvious rashes it was determined I had no rheumatology related diseases. No blood tests, X-rays, or MRIs. Only a brief general questionnaire and this specialist felt there was absolutely nothing wrong. I left being able to request at least an X-ray.
I had to request an MRI
That X-ray showed some abnormalities and requested further investigation from an MRI. When I contacted the specialist about this, I was told there was no need because it was not a rheumatology issue. I stuck to my gut feeling that something was wrong and I got my family doctor to request an MRI, which indeed resulted in an AxSpA diagnosis.
It left me skeptical, and frustrated
This experience left me feeling very skeptical of my health care team, and while I appreciate and respect all the help of my family doctor this was a major life lesson to take things into my own hands, not only with my health but all aspects of life. It was very upsetting to know I had felt something was wrong all along and being told absolutely everything was fine. This lead to my diagnosis feeling like it was no big deal, I’m assuming as a way for my rheumatologist to not feel she had done wrong but impacted my diagnosis journey.
I now have a rheumy who listens
I now have a new rheumatologist that works with me and listens when I express concern over my body, but I also feel more empowered now to specifically ask for additional testing or a better explanation if I don’t quite understand. I feel like this is a situation no one should ever experience but it has taught me so much and I’m grateful for that!
Have you ever experienced medical gaslighting?
Does reading AxSpA patient stories help you in your journey?