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What I Wish I Could Tell My 15-Year-Old Self Newly Living With Dysautonomia

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While I was in college I took a social theory class. You know, one of those classes that pushes your values and morals to their limits and opens your mind to new perspectives. One of our assignments was to write an essay to our 15-year-old self. The only stipulation was that the body of the essay needed to have at least five life lessons. I think about this assignment often, not because it was earth shattering — actually my essay was horrible, it was riddled with cliché. However, I think about it because I wished I had written the truth.

I have had neurocardiogenic syncope (NCS) since I was 14 years old. I have what seems to be the common diagnostic story of many people with dysautonomia. My youth was filled with countless doctors’ visits, medical tests, and phrases such as, “it’s all in your head, it must be anxiety, depression, and an eating disorder” were the mantras to my adolescence. I was 22 (eight years, people) when I was finally formally diagnosed. And even then the only advice given was to increase my salt intake. When I think back on this time (I am 29 now), I thought my life couldn’t get any worse. For someone who has a chronic illness, I tend to count my blessings. I am still able to life a relatively “normal” life… whatever normal means to you. To put it plainly, if you were the person walking beside me down the street, you’d have no clue there was anything wrong with me. This is just as much a curse as it is a blessing… but that’s a topic for another day.

Now that you got the skinny, back to this essay. At the time that I wrote it, my illness was a distant illusion — there, but not something that I was constantly reminded of. The problem with my essay was that I wrote it to a 15-year-old girl who wasn’t me. My essay was to the stereotypical 15-year-old girl that most likely had her first crush on the boy next door that would never give her the time of day but by the end was prom queen. Sound familiar? My essay encompassed every coming of age story from the late ’90s, it was a fairy tale (the Disney kind). Only I didn’t end up with Prince Charming or the animal sidekicks. I ended up with almost no bladder control and unexplained changes in my bowel movements. I was two steps away from adult diapers. I learned a lot about myself and others surrounding me. These lessons in humility made me remember that essay. Most importantly, it reminded me of the missed opportunity I had to share my story and help others like me who end up with a different kind of fairy tale.

So, take two — here are the five life lessons I would tell my 15-year-old self, from the 29-year-old who still doesn’t have her life together.

Lesson one through five: Screw life lessons!

There are no life lessons. There is no perfect way to live this life, there is only living life. I do not believe we are able to choose the joys and misfortunes gifted to us, however, I do believe we can choose to accept them and decide what to do with the joys and struggles given. So, live your life any way you choose. This life is too short and harbors too many unknowns to waste time wondering about the what ifs and why me’s. It is why I now choose to live my life with passion and why I have finally decided to open my mouth and start a conversation.

What life lessons would you choose to share?

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Thinkstock photo by seb_ra

Originally published: April 20, 2017
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