Example of Patient Advocacy as a Teen, Helped Manage Anxiety Now

Example of Patient Advocacy as a Teen, Helped Manage Anxiety Now

Living Life with CP

It was October as I remember it. Mom picked me up from school and a thick tension hung in the air, blasting out of the car the moment I opened the door. When I got in a wave of dread washed over me. The drive from my high school to my home was short and I don’t remember anything being said. When I walked into my house the smell of dinner cooking filled the house. My favorite, a red velvet cake, was sitting on the counter.

But I was numb, as usual.

“Eat a piece,” mom said, “We’re going to the hospital.” I couldn’t eat. My stomach was filled with lead and my mouth watered with a copper taste. I felt horrible. I was having a tough time despite months of therapy and switching therapists. My widowed mother was at the end of her rope for how to get me the help I desperately needed. Within the hour I would experience my first mental health ER trip. My mother thought it was the best way to get me the best care she could. She was right.

A doctor and nurse came in asking that I remove all jewelry and piercings, strip from my clothing into a gown and pee in a cup for a pregnancy and drug test. They asked me if I was hungry, but my mind was spinning, my body filled with indescribable anxiety, making everything happening around me seem far away. I was a super-depressed kid who just lost her father, entered middle school, was disabled, and was severely bullied. My body literally shook with fear at the thought of having to go to an inpatient program because, honestly, even at 15 I didn’t have the ability to completely care for myself and I was embarrassed.

Luckily, I was not admitted as an inpatient. I did an intense outpatient program with individual and group therapy. I was one of the lucky ones whose mom really believed and advocated for me. I’m sill learning lessons from that program today.

It was my junior year in college when I decided I would transfer campuses and get out on my own. While it was liberating. I realized how difficult and inaccessible so much of it is, especially when you’re in a new city by yourself where people don’t know you.

I’m sitting in my power chair in a late-afternoon class, exhausted. The fire alarm goes off. My peers get up and evacuate the building. I lock eyes with my professor. We’re on the 3rd floor, I’m in a wheelchair and we’re in an emergency situation. My professor doesn’t know how to get me out of the building and is telling other students to alert people to where we are when they get outside. She also is using her cell phone to try to contact people to alert them about us. I call my mom to try to explain the situation because I don’t know what to do. No one came for 30 minutes. When the police arrived they told me to use an elevator to get out of the building. (Think about that.)

Flash forward to my senior year in college. I returned to campus in the fall. Many of my classes were in the same building as the fire incident, one in the same room. I was excited about my studies that semester and I headed to the classroom. And, for the next three weeks, every time I entered this room my palms would sweat, my tongue glued to the roof of my mouth to keep me from vomiting. My thoughts raced, making it hard to focus on the lecture. My mind would become fuzzy, and my body very hot. I grew to dread this class. I would rush out at the end despite needing help because I could not focus. I felt like I couldn’t breathe in that room. I would leave early and eventually I couldn’t bear to go at all.

I was experiencing anxiety. I never had it before. It was terrifying. I felt alone. I was alone. By the time I returned home, my anxiety worsened to the point that I felt unsafe to leave my bedroom or my house unless I was with people I knew and trusted. Within the first week of being back home, I began taking medication for my anxiety, which gave me my life back.

This time I got the help I needed without the ER hassle I experienced as a teenager because I knew where I struggled. I knew the help I needed. And I knew how to advocate because of the strength of my mother.

Stick to your guns. Know that you know yourself, and if you believe something is not right with you,  advocate to make it right. Stay strong and remember: You are your own best advocate.

Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.

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