Adventures as a Recent College Grad Living with Chronic Illness and Training a Service Dog

Thursday, September 18, 2014

Living with an Invisible Friend

Little kids get patted on the back and called creative when they have invisible friends. Mine is not so creative, but rather destructive. It's been reeking havoc on my nervous system since I was 14. Sometimes it will seem like it's on a vacation and I'm free of its cruel tricks, but it has only proven a matter of time before it comes back. 

My invisible friend is a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome, or POTS. In the last 15 months it has been more visible due to it now causing me to be wheelchair bound, but it's been around for a while. 

Researchers are still trying to find out why some people develop POTS, but they have had recent success in proving what it is.  

They have found that people who have POTS have a specific antibody that's abnormal, and the more antibodies a person has, the more severe their symptoms. This leads them to the belief that this is something called an autoimmune condition.

Enough fancy medical talk- the plain of it is that I have this disease that causes my nervous system to royally stink at its job. It can make my heart rate go sky high, my blood pressure go lower than a machine can read, my stomach to decide to boycott food, and for my head to feeling like it's spinning on a turntable. On the rare occasion- just everything seemingly stops and I faint due to not enough blood getting to my brain.

Why am I writing all of that? Because a certain friend (cough JUSTIN cough) just wrote an amazing piece about Living 'sick'. 

I'm plenty familiar with the feelings that he talks about. The people that are amazed at seeing me in the grocery store... The people who watch me get in and out of my wheelchair to the car as if it was a heroic act...The people that say "I don't think I could ever overcome what you have"

You don't know. Until you are in the situation- you just don't know. Just three years ago, I was Circuit Champion at HITS in the Jumpers. Today, I'm in a wheelchair and can't stand up for more than 2-3 minutes without fainting. I'm also going to call out another friend on here that has been through a life situation recently, Ashley. 

My favorite quote from Ashley is from a conversation about a situation in a grocery store where someone saw her shopping and came up and called her an inspiration. Why? Because she was bald. Her thought process afterwards that she shared- Don't call her an inspiration!

I think it's really common to look at someone that is facing a different struggle than yourself, and to think that they need help, or seeing them spurs you to think how fortunate you are. While those are both completely valid thoughts- it's the comments that come out of peoples' mouths that can make someone living with any disability- invisible or not- feel like they are less of a person.

I think the take home point is that I OWN my illness. It does NOT own me. I HAVE Postural Orthostatic Tachycardia Syndrome. It might change the way I get around and the way I have to plan my day, but I still get to do what I want to do, and I AM STILL ME.

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