"I'm So Sorry You Have To Deal With That"
Not too long ago one of my doctors wanted to make an adjustment to the dosage of one of the meds I take for #PosturalOrthostaticTachycardiaSyndrome .
It went very poorly.
Anyway, I had to control my symptoms fairly publicly one day. I even sat out in the rain for a bit to help with self-regulation. I was barefoot, without a jacket, and it was maybe in the 40s, but my CNS did not care about facts at that moment.
So I ended up sharing about my chronic illness with a few new people after that.
After my follow-up w/ cardio, we determined that I'd be staying at my usual dosage. From there, I let myself get back up to maybe 75% baseline functioning and then basically put it out of mind. Since I was just returning to a prior dose, I figured the rest would come.
I saw one of the people who had recently found out about my diagnosis, and she asked for an update. It took me a second to figure out what she was talking about, having already filed it away in my mind, but I brought my brain up to speed to have the conversation.
I have different levels of routine answers about my medical issues depending on how much the person asking really cares to listen/ is actually asking.
I ended up explaining how POTS was actually one of a system of medical issues I have stemming from a genetic condition #EhlersDanlosSyndrome .
It was then that she said she was sorry I had to deal with things like that, and I genuinely had to sit back and think what that meant.
"Things Like That".
I then was probably more honest than I needed to be with her, and more honest than I usually am, with general intro conversation about my 'genetic stuff, but I was talking as I was processing... ' [Especially because I saw her tear up while I was saying it- whoops]
I told her I have no concept of what it is like not to be dealing with it. I don't know what it is like to not be in pain. I don't know what it would be like not to be thinking about when to take my next medication or what my water intake is. I don't know what it is like to go more than a week or two without seeing a doctor. I just have never had that room empty, and I can't comprehend what it would be like to have that space.
#ADHD #Asthma #ObsessiveCompulsiveDisorder #PTSD #Depression #MastCellActivationDisorder #Migraine #ChronicVestibularMigraine