The Most Important Lesson I Learned After Being Mistreated by Doctors
It’s normal for people to experience a temporary difficulty in swallowing when they don’t chew their food thoroughly, and/or eat food too fast. But when swallowing becomes a constant problem, then it can be something more serious, like dysphasia. Dysphasia usually falls under two major categories: esophageal dysphasia (the feeling of food sticking or getting stuck in the esophagus) and oropharyngeal dysphasia (the throat muscles are too weak to pass food into the esophagus). Unfortunately, there are no official statistics of how many people are affected by it, because it usually is seen as a symptom of another medical condition, instead of being diagnosed on its own.
By 16 years old, I had suffered from a series of severe anaphylactic allergic reactions to medication and foods. While in the ER for severe chest pain, which was later diagnosed as acid reflux, I was given a baby dosage of morphine — a medication the ER doctor knew I was allergic to, but still gave me. The allergic reaction I had to the painkiller was so severe, my throat muscles collapsed.
Consequently, I couldn’t swallow solid food, just sip thin liquids, like water, Pedialyte and clear soup broths. As a result, I suffered from malnutrition, dehydration and a dramatic weight loss of 60 pounds in four months. I was withering away. My doctors, unable to find a short or long term solution, put me on a routine of multivitamin IV treatments. The IVs barely kept me alive.
Mom took me to 17 different ENTs (ears, nose and throat) and a gastric specialist. The first few doctors thought my swallowing problem was for attention. It’s not that I didn’t want to swallow solid food, I couldn’t swallow. By June of 2006, I was diagnosed with oropharyngeal dysphasia.
No one knew how to help me. I was given six months to live.
Mom, not wanting to accept my death sentence, frantically searched the internet for answers. She found a medical treatment called EST (electric stem therapy). EST uses electric stimulation to help the throat muscles flex, in order to swallow. Within a few weeks, I started EST at a small pediatric acute care hospital.
When this ordeal began, Mom recommended we keep documentation. While Mom kept a folder of all my doctor, specialist and ER visits, I kept a folder of my calorie intake and daily symptoms. Together, we kept a third folder of accumulated medical expenses. This documentation helped me organize my priorities, while it helped my parents budget their financial resources for my treatment and recovery.
Since none of my primary care doctors had dealt with oropharyngeal dysphasia before me, the information Mom and I kept helped them track my progresses and regressions. To better assist my doctors, Mom and I did extensive research which taught us about the treatments available for swallowing issues. The research was used by my doctors to treat me and other patients with swallowing issues, more effectively.
While the EST treatment did help me regain basic swallowing abilities, I had to deal with other medical problems, such as gastric inflammation, acid reflux and rotting teeth, while discovering other medication and food allergies. This made my recovery much slower. Today, I still have some oropharyngeal dysphasia symptoms, including the inability to swallow pills and eating at a slower pace.
My disease has taught me to keep extensive records, research, be my own advocate and most importantly, learn to forgive.
At first, I was intimidated to disagree with, or challenge a doctor or specialist’s recommendation or diagnosis. But I had to, if I was going to get the help I needed.
For example, I went to a highly respected allergist, who wanted to put me on an opiate painkiller and a dairy protein shake. I had to advocate for myself, telling him I couldn’t take them because of my allergies. After all, no one knew my situation better than I did — I lived with oropharyngeal dysphasia everyday. Annoyed by my questioning, he told me, “Do what you want. But you won’t get better.” I realized I had to look elsewhere for appropriate care.
In order for me to progress, I had to forgive those who hurt me. I despised the doctors and specialists whose treatments hurt me, or accused me of faking my illness. In my heart, I felt I could only fully recover if I let go of my ill feelings.
By forgiving, I was able to release the resentment that was hurting me.
As difficult as oropharyngeal dysphasia has been, I now have a great team or doctors, a specialist and physical therapist I can rely on if I have a relapse with my swallowing. They are my safety net as I pursue my passions and explore life.
Justina is a freelance writer, administrative assistant, and caregiver to her younger autistic brother.
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