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GraceAnn Shaner

Dair Arnold

English 1101

September 13, 2019

Invisibly Disabled

Laying there with the catheter in my vein of my right arm, waiting for the ER nurse and

doctor to tell me what was wrong with me, I feared I would never see my school again. I feared

that I would never graduate high school or even be able to walk by myself from my room to the

bathroom ever again. In that moment, I felt that my whole life was ruined and I will never

achieve my goals. I was sure that this would be the worst thing to ever happen to me. Warmth

from my mom’s hand filled my heart and my mind with a sense of support as the doctor entered

the room. “You were dehydrated again, make sure that you are drinking more fluids and

hopefully this IV will help you get a head start.”

When you think of someone who is disabled you probably think of someone in a

wheelchair, who has a mental disorder, who is obese, or who is paralyzed. That’s what I thought

too before I was diagnosed with a disability, only the difference is that my disability is invisible.

Not many people know what it is and those who do know what it is, don’t really understand it,

even doctors. For years I went to cardiologists, neurologists, physicians, etc. to find out what was

wrong with me. Every time was the same answers, “Drink more fluids,” “It’s all in your head, I

suggest you get into psych,” or, “you just don’t like the feeling of exercise.”

Finally we met Doctor Grub and his Nurse Practitioner. “We are diagnosing you with

Postural Orthostatic Tachycardia Syndrome, known as POTS.” A million thoughts raced through

my head. Can it be cured? Will it ever go away? When will I start feeling better? What does that
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mean? Why did I get this? As each thought entered my brain, they answered it as if they could

read my mind. “This means that you have low blood pressure, blood pooling, and a fast heart

rate, causing you to pass out easily. You also have a weaker immune system, short term memory

loss, and more. Some symptoms you may experience are periods of shaking, periods of paralysis

and the inability to speak, periods where you just can’t understand what others are saying to you,

and more. There is no cure and … ” I blanked out as they continued talking. At one point they

started talking about a wheelchair and how I was going to be covered under the disability act

when I was older. This is the worst thing that has ever happened to me. My life is ruined. I’ll

never be normal again.

For about the first year of having my diagnosis, I went through the 5 stages of grief. First

I denied it, then I was angry, then I was depressed, then I was bargaining with God and my

doctors to try and fix me, and finally I accepted my diagnosis. I lost so much because of this

disability that I thought I had no purpose left in life. I lost all of my friends, I lost the ability to

care for myself 100% of the time, I lost my freedom, I lost the ability to do my favorite things

like riding roller coasters, and I had to avoid things that people with epilepsy had to avoid

because strobe lights made me shake. It felt as though my heart had been ripped out of my chest.

The worst part was not having anyone who understood what I was going through. Everyday I

would get people who said things like, “Be thankful you aren’t dying,” “It’s all in your head and

you’re being over-dramatic,” “You just want attention.” My doctors continued to tell me that

even though it should not be part of my identity, having POTS was going to help me grow into

an amazing person one day. I didn’t believe them.

A few months later, I had a few good friends and school was going fine. I was finally in

acceptance with my diagnosis and I was genuinely happy with who I was and where I was in life.
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When we got to December and January, I started to wake up in the morning and collapse or pass

out because my body was so tired. It didn’t matter how much water I drank or how much rest I

got, my body would not let me walk or move without assistance from someone else. I couldn’t

feed myself some of the time, I couldn’t go up and downstairs so I slept on the couch for a while

and went without showering for days at a time, and if I wasn’t at home on the couch, I was in the

doctor’s office or in the ER getting an IV. I started to miss school a lot and it became difficult to

get caught up in my classes. My friends started to not talk to me anymore because I could never

hang out and I was never at school. I was failing all of my classes.

I didn’t have the strength to go back to school until the beginning of the 4th quarter,

leaving me with a quarters worth of makeup work and tests. I was failing all 6 of my classes and

I had no help with getting back on track. It became overwhelming to the point where I had to

stay in the guidance office all day for about two months. I got back to my classes about two or

three weeks before exams and when exams came around, I still had makeup tests and work to do.

I thought for sure that I was going to fail my sophomore year of high school.

Some nights I would lay in my bed and cry myself to sleep wondering why God let me

have this disability and why this was happening to me. I didn’t understand what I had done to

deserve all of this. Then one morning, I woke up and realized that I needed to stop moping

around and find ways to help myself get better or I never would. I started to do very light

exercising and became a vegetarian for about two months before returning to only chicken. I

started to have more energy, less fainting, less tremors, and I started to be able to do the things I

love. A few months later and I am in a program through Warren County for Pre-Nursing, a

program that is not easy to get in to. Reflecting on this disability, I do wonder sometimes what

life would be like if I never had POTS, but at the same time I’m glad that I got it. It gave me a
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reason to grow up and learn to advocate for myself. Not only did I learn how to care for myself,

but I also learned that I enjoy the medical field very much and decided that I want to become a

surgeon. Sometimes what may seem like the worst thing that ever happened to you turns out to

be what helps you grow into the person you always wanted to be. If I could change if I had this

or not, I’m not sure what I would do. But one thing’s for sure that I know I would never be

where I am now if I never got diagnosed or developed this invisible disability.