The Trauma of Disbelief
Medical trauma is real and can be incredibly distressing. For those of us with chronic illnesses like narcolepsy, medical offices tend to become our second home, and so we really need to feel safe in those environments.
If that emotional or physical safety is endangered at any point, it can be incredibly traumatic. We rely on the ability to openly express our experiences and trust that we are being heard, understood, and believed!
I have seen a LOT of doctors
Unfortunately, living with multiple chronic illnesses means that I see A LOT of doctors. I am incredibly lucky that for the most part, I have a kick-ass team of medical professionals who all go out of their way to make me feel comfortable and provide care for me.
However, there are a few times in my life that I have been subjected to experiences with some questionable doctors. In order to be diagnosed with narcolepsy, I saw 3 different sleep specialists. Thankfully, the last one was incredible. However, I definitely had some damaging interactions with the first 2 doctors.
'It must be depression...'
As someone who also deals with mental health issues, I was told countless times that my sleepiness was caused by my anxiety, or my trauma, or my depression. If I just stick to therapy and take my antidepressants, I should see improvements.
The thing was, that by the time I was seeking help for my sleepiness, I had been in therapy for 5+ years and had been taking antidepressants for a lot of that time. By their theory, I should have been seeing at least some improvements, but if anything, my symptoms were getting worse. I was having more nightmares, more sleep attacks, and I was struggling to function more than ever.
'Come back in 12 months!'
I think this was one of the worst interactions I have had with a doctor. I had seen him multiple times across the space of 6 months, had 6 sleep studies, trialed CPAP and medications, and seen absolutely no improvement. At this point, I was obviously put in the "too hard" basket. I was told to just keep doing what I was doing and come back in 12 months if I was still having trouble.
I remember the feeling of my stomach dropping and my thoughts spiraling as I left the office that day. I sat on the curb outside the building for nearly an hour, sobbing and trying to catch my breath.
How could you tell someone who is begging for your help, struggling to survive each day, to just wait 12 months? I was honestly afraid that I would never get better or that I would die on the roads trying to get to work because I fell asleep at the wheel.
The effects of medical trauma
I didn't realise how much these other doctors had traumatised me — leaving lasting impressions on my psyche. I felt guilty for using the word trauma because it didn't seem that bad. But, to this day, every time I see a doctor, I question if they believe me.
I am constantly afraid that they will give up on me because they don't know the answers. I even doubt myself and my own experiences sometimes because they were invalidated so many times in the past. However, with finding an incredible new team, I have started to trust again and know that finally, my health is in good hands.
At what age were you diagnosed with narcolepsy?