Dysautonmia Awareness Month
Alright team. October is dysautonmia awareness month. I am not the best at keeping involved in the chronic illness community because denial is my favorite drug, but dysautonmia is one of my diagnoses and it is arguably one of the more dangerous elements of my illness.
What is it: Dysautonmia is a dysfunction of the autonomic nervous system (ans). Dysautonmia can be a stand alone problem or (as in my case) a symptom of a larger neuro-inmune disorder. Make no mistake though, dysautonmia can eff shit up for a person. It is considered an invisible illness, which means it is one of those illnesses where - to the naked eye - it can look like the person is faking it, which is why awareness is so important.
My story: like I said, for me, dysautonmia is a symptom of a larger underlying neuro-immune disorder. This is not uncommon. Years ago, I noticed episodes of dizziness and struggles to stay conscious. My dad, an old airforce pilot, taught me tricks to try to keep myself conscious during those times, but it was happening more and more. One day, I went out to get the mail when it happened and I busted open my knee on the concrete on my front step. I went to the doctor and asked if I could have an mri. The doctor laughed at me - at this point I had been treated for migraines and some rough gi issues. So, my doctor started saying things like, “This doesn’t make any sense” and dismissing me. But my symptoms progressed. I experienced numbness, my feet and hands would turn purple, temperature issues, my vision blurry and struggles adjusting to light, my gi problems got so bad that my skin went what one friend describes as a “sickly translucent color.” So, after a year or so, I decided to try again. I got a new doctor and she referred me to a cardiologist who ordered the tilt table test.
The tilt table test is a really common test in the dysautonmia world. For my test, I was given was an iv with saline - that’s all. The tilt table test just tests your ability to ~ essentially ~ stand up slowly. So, I decided to just meditate and maybe even nap. It’s a dark room and I was pretty comfortable in hospitals at this point. Then, I noticed it, uncomfortable sticky hot feeling and a slight nausea with my blackening vision. I was used to this feeling. But the next thing I knew, I was waking up in a bright room. The cardiologist and techs were almost… excited.
One of them leaned over me and whispered, “We don’t usually get to see this.”
“What?” I asked really disoriented.
My cardiac electrophysiologist would later tell me that this is called an asystolic episode and there is a long flat line on my chart. He said that it had nothing to do with the health of my heart (which is very healthy) but that it does have something to do with the health of my nervous system. He said that my blood pressure also dropped extremely low. He referred me to a university clinic that specializes in dysautonmia but they told me they were not comfortable testing the extent of my dysautonmia because of the asystolic episode on record. So, instead of receiving extra help, no one wanted to take ownership and all of those issues are still a problem today.
Awareness matters! My story is not unique! I’ve talked to many who have had issues with getting this illness diagnosed and treated.
When I’m in public, sometimes I do stupid-looking things like lie down on the sidewalk or sit on the floor shaking. Sometimes, I fall or make weird faces. Sometimes, I use walking assistance devices, and sometimes, I set them down. It would be nice if people understood how dangerous those situations can be for me and just let me and others try to live the best lives we can without judgment or comments.
But even bigger, I have encountered a few others with dysautonmia who have been passed around from specialist to specialist with no one really wanting to take ownership of the symptoms or treatment (if treatment is possible - sometimes treatment is about the underlying issue), which tells me that treatment research/options still have a long way to go. Awareness matters, because it helps encourage research, funding, and treatment.
That’s where you come in; you can help just by spreading awareness, by talking to people about this post and making sure you offer people a little grace when they seem to be acting strangely in public. Your actions matter!