I have a disease, or a syndrome, or…I don’t really know what to call it. “I’ve got this thing called Ehlers Danlos Syndrome,” is what I usually mumble to people when they ask what’s wrong with me. Otherwise it tends to go unmentioned. Partly because I don’t want to be seen to be whining, and partly because when I do mention it people dismiss it as something that isn’t that serious because, I suppose, they don’t understand it. I barely understand it myself after years of living it, so how am I meant to explain it to anyone else?
As a child, I think I always loved food a little too much. I depended on it to bring me joy. I hoped it would make me happy. I would think about it constantly and had to eat everything I craved. Any food I saw, I just had to have.
It’s no secret that the American healthcare system is a flawed and expensive institution. In 2014, following the passage of the Affordable Care Act, 33 million people remained uninsured (Smith and Medalia, 2015). That same year, the United States spent a total of 3 trillion dollars on healthcare and two years later, the state of healthcare still remained critical (Health Expenditures, 2016).
Being nice to myself is one of the most difficult things for me to do. My automatic mind is to ridicule myself until I get it “right.” But, my past anorexia, binge eating disorder, body dysmorphia and bulimia have always resulted in the complete opposite.
Before 2013, Lula* was living a happy life. She was an active, lively person who loved being outside. She was a hiker, a gardener and had just gotten married, life was pretty great.
But one day, Lula woke up and realized that her feet had gone completely numb, she couldn’t remember the last time she had felt them.
Tori* was an active person who used to working out frequently. One day while working out, she was suddenly struck with a crippling dizziness that would stick with her for 7 years.
Living with a chronic or undiagnosed disease is a grueling, endless battle that leaves you clinging to the remnants of your sanity. The symptoms are incapacitating, the financial strain is crippling, and the emotional toll it takes is a beast unlike any other.
The emotional destruction is almost a rite of passage for the chronically ill patient. You may turn to family and friends for support, but quickly find that no one understands your plight. During your darkest moments, their indifference can feel like a betrayal. Where do you go from there?
“Well, that’s quite a rash you have there”
“Yes, it is–what is it?”
“That sounds serious?”
“It’s nothing to worry about”
“So, what do I do about it?”
“Nothing, it’ll go away on it’s own.”
Most people think that the hardest part of Alzheimers is watching someone you love deteriorate before your eyes. Alzheimer’s systematically takes away each quality that you love about that person, ticking each element off each piece of their character off like it’s a check list, one by one, until there is nothing left but the hollow shell of the person they once were.
With my experience, I found that my biggest Alzheimer’s heart break wasn’t with the patient, but with the care taker.
Your outfit of the day, your #OOTD, your power suit, your perfect desk to date wear, it sounds like such a small thing to be able to wear something that you are proud of and feel good in to work, but the second that is taken away from you, you realize it makes all the difference. It changes your attitude, your demeanor and how you carry yourself amongst your co-workers, customers or in this case, your patients.