My Experience With Achalasia

I don’t really remember how it started but I’m pretty sure it progressed quickly. I described it as a “stuck” feeling. It was hurting me, so my parents took me to the doctor. I remember doing all these tests, first an x-ray and then an endoscopy.

An endoscopy is a procedure where they put a small camera down your throat while they look at your throat and esophagus. I was only 10 years old. I had to be awake during the procedure with no anesthesia since I needed to swallow while they viewed my reflexes. Nothing came up in the tests.

Th stuck feeling happened more often as time went on. It was actually food getting stuck at the bottom of my esophagus as I ate . My parents, not knowing what was going on, were frustrated. They didn’t know the cause and were beginning to wonder if I was making it up. They tried to coerce me to eat. They begged me, pleaded with me and eventually…hit me so I would stay at the table and eat.

When food would get stuck in my chest, I would have to wait until it passed, otherwise continuing to eat would be agonizing. Eventually, I figured out how to force myself to throw up to help relieve some of the pressure from the food blockage.

By the time I was 11, I was throwing up regularly. At meals, my parents watched me like a hawk to make sure I ate; they were still skeptical it was a physical ailment and they shamed me for not eating normally. To them, I chose not to eat. So I found excuses to leave the table and threw up in secret. If I had a lot of trouble eating and used up all my excuses to go to the bathroom, as soon as they left the room, I would throw up in a bag, hide it and dispose of it later.

Eventually they caught me. They found one of my bags of throw up.

11 year old me just didn’t know how to deal with it. The tests said that I was lying, that I had no physical problems. So why did eating hurt so bad?

So now my parents knew I was throwing up to relieve my pain. Except they didn’t really know how much pain I was in. To them, I was just choosing not to eat and throwing up. I felt their eyes judging me as I left the table to “use the bathroom.” I could smell their disgust towards me.

These were the hardest years of my life. The pain got worst and by 12 years old, I couldn’t go a meal without pain and that stuck feeling. My parents and I fought while my sisters watched quietly. One day, they demanded that I stay at the table. “Don’t you dare get up!” they said. I squirmed and writhed in pain as I felt the pressure of the food and my own saliva build up on top of each other. I remember my parents threatening me as my eyes rolled back and I started to faint from the pain.

Eventually they took me to see a psychiatrist. Because of my young age, they thought I was anorexic and bulimic. You would think that a psychiatrist would actually know I was in physical pain. But she diagnosed me with depression. She proceeded to tell my mother that she was the cause of all my problems and put me on Zoloft.

Well, shortly after my therapy stopped. My mom didn’t like hearing that. I was better off anyway, looking back, that psychiatrist just wanted to collect on the exceptional insurance that my dad’s work offered.

The following months were more of the same. More doctors, endoscopies, and barium swallow procedures. The barium swallow was the worst. It was like getting an x-ray done while drinking this nasty chalky drink. I did these tests a few times and nothing was coming up. Honestly, I think the doctors just didn’t know what they were looking for. My esophagus hadn’t been working well for years.

The puberty years are so hard and I had to be sick through it. It kept getting worst and worst. By the time I was 13 years old, I had cried so many times over it and was even considering suicide. It really messes with you to be told that you’re crazy. I’m sure my parents felt a lot of guilt after learning it was actually a physical ailment.

Lesson to parents. If your child tells you they’re in pain, BELIEVE THEM.

When I was 14, I finally saw a specialist that was able to properly diagnose me.

I had achalasia.

Finally, I knew what was wrong with me. It felt like a weight being lifted from my shoulders to finally know it wasn’t all in my head. Achalasia is a rare esophageal disorder that caused my sphincter to tighten abnormally and close the opening to my stomach. The stuck feeling was actually called an esophageal spasm. And food and liquids weren’t able to reach my stomach.

By the time I was diagnosed I looked so sickly and terrible. I struggled to eat every other bite. Fluids were getting blocked. I remember I hated taking pictures and was afraid that people thought I was anorexic. I threw up every meal and several times a meal. The pain never passed unless I threw up. The pressure of the food increased and increased. It hurt so bad because I kept it secret from other people at school, so when I had an esophageal spasm, I would just hold it instead of throwing up. It gave me anxiety to eat at restaurants, go to theme parks, or at my friends’ houses. Achalasia literally ruined my life for those 4 years.

Once I was diagnosed, it didn’t get better right away. They did a dilation procedure. This procedure required me to go under general anesthesia while they placed an instrument down my throat; it expanded at the site of tension to weaken the abnormal muscle. That worked for a few weeks but the spasms always came back. We did this procedure at least 3-4 times. But the abnormal muscle just kept getting stronger and made it more difficult to eat. Then I took a turn for the worst. In the end, I needed a feeding tube inserted through my nose since I couldn’t eat a thing. I was so thin and weak, just basically waiting to die. My face was gaunt and my arms like twigs. I had lived with it for so long now the spasms were constant; I felt happy if I could get liquids down. I grew to hate eating in general.

The heller myotomy was a godsend. It was a miracle. It was the final option for me. The surgical procedure cut through my abdomen to get to my esophagus; it cut and weakened the muscle that was giving me problems. When I woke up and tried to eat, I cried as I realized I was fixed. I could eat again. I remember my parents and I being so grateful, we gave the doctor chocolates at the follow up appointment.

Thankfully, I’m 99% better now. I’ll never be fully cured of my achalasia, but I don’t get spasms that often now. Maybe once a month or at most a handful in a month. I forgave my parents for how they ignorantly gaslighted me and shamed me for my sickness. But I still hide my spasms from everyone. Old habits die hard.

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