Misdiagnosed as a Child
For as long as I can remember, I have always had a hand on my side or front of my stomach. Everyone these days has experienced some kind of abdominal discomfort, but this was a different experience for me. It was like a tight knot extending from underneath my sternum to the bottom of my belly button, while wrapping around my lower back. Truly uncomfortable. I’m not someone who would generally visit the ER or doctor’s office, but at this point I had no choice. I tend to tolerate the pain or usually nap to lose the thought of feeling the discomfort. It only subsides for a little until I wake up.
Fast forward to a few years of middle school and leading up to early junior high school, I lost a lot of weight. Not like shedding a few pounds but like dropping to the point where I was afraid of telling people my weight or going on a scale. I went from shopping at teen/adults stores to fitting perfectly in the children’s department.
People definitely noticed my weight change. Some friends of mine would throw a compliment and tell me that they’d dream of being my size, but deep down I was concerned and not fond of the way I looked..inside and out.
I also had trouble eating, digesting foods properly, keeping up with my weight, and was always sooo SLOW with finishing or close to halfway eating a meal. I could never leave the table without finishing a certain amount of food on my plate. My mom would sit with me for hours to make sure I wasn’t going to throw anything out. She thought I was anorexic and had eating disorders. To most parents, this was something on their mind because of sudden unexplained weight loss and early satiety. That brought me to a bunch of different therapists, psychiatrists, psychologists, etc. Nothing of course helped, not even protein shakes like Boost, Pediasure, Ensure, you name the meal replacement shake.
Honestly, I felt ashamed and embarrassed. I hated looking into the mirror in the morning on the way to school. I normally wouldn’t want to wear the things I liked because it would show too much skin and bone or it would fall off of me. It got to the point where if everyone believed I had an eating disorder, I may as well act like it. I wore baggy clothing, rarely wore makeup or too much to cover the paleness or the structure of my face. I tried to wear clothes that I wanted but of course didn’t fit me well. I would refuse to eat lunch. But in reality I was just not getting hungry anymore. Not that I was choosing to eat slow or not eat, my body was telling me to give up. My mind was going insane and telling me if you eat this, you’ll feel sick and may want to throw up. Little did I know, I tried forcing myself to eat more than I could handle, and I would throw up. I would regurgitate bile, reflux, acid, vomit, and make myself swallow it back down. Of course I’d have to make the excuse to my teachers that I was on a phone call with family or a doctor or had to visit a teacher for xyz since I was in the restroom for a long time. It got to the point where those excuses weren’t feasible. The teachers were curious and put the pieces together with other faculty and eventually called my parents. My mom was concerned about my health and brought me to more therapists. I was told by many that my pain was all in my head. I just have severe IBS and GERD and all the other GI issues you can think of. All of that was diagnosed by two GI specialists to which were only covering up my real causes of agony.
School was difficult for me. Besides the teasing from the acne and the general bullying, I didn’t feel as smart compared to my siblings. I struggled a lot with attention deficit disorders, interpretation issues, understanding certain subjects. I was eventually evaluated by a specialist and was diagnosed with ADHD, anxiety, and depression. Go figure with the depression since everyday I wake up and ask myself, why isn’t anyone believing me when I tell them I am in pain? I grew up always asking myself that question and honestly I continue to still do that now. Therapist after another, allergist, Pediatrician to the next General Practitioner, nothing was clearing my pain. Everything was replaced with what it could be. My diagnosis was never accurate in my opinion. I dealt with the claimed eating disorders, severe depression, anxiety, panic attacks.
As I moved on to the second GI doctor, finally hitting 2017, I was diagnosed with everything under the sun in a GI handbook- from GERD, acid reflux, Gastritis, Esophagitis, IBS, and many more. Lot of my tests came back pretty normal but with tiny issues especially for my age. Eventually I got way worse and the medicines I was prescribed kept changing. Nothing was helping me, not even over the counter pain medication. The pain started in my left side, lower back, left flank area. I would be running around with my friends at recess and suddenly get extreme sharp pain on my side. I was told continuously that it was nothing, probably a muscle strain but it continued. I would always leave from the nurse’s office to go home to the doctor’s and be told I had kidney infections, bladder issues, UTIs. I was just in middle school when this all started. The pain was unbearable and I remember vividly the first night I felt the monster. I don’t recall what age I was but it was in 2010 I believe. I woke up in the middle of the night screaming like I had a horrible nightmare. Sweating and fighting for relief. My body felt like it was melting into the sheets and I couldn’t control the stabbing sensation in my left side. I felt like someone took a long strap and wrapped it around my stomach until it couldn’t go no more. I was turning pale by the second and I felt no relief even after my dad came running in to carry me to his car. I remember crawling into the back seat crying and screaming for help. Once I got to the emergency room, I was admitted for who knows how long. I did a couple tests and stayed overnight for a few days. I was possibly dehydrated too because I never seemed to keep down any liquids, not even water. I could rarely handle digesting anything sitting up. I vaguely remember doctors and nurses coming in and out with different medications and IV treatment to try to get to the bottom of this diagnosis. A few people came back at different times from behind the curtain and showed up with packets of paper work. Results from blood work, testing, imaging, notes. Finally someone spoke and told me I needed to see a kidney specialist. I had a cyst growing on my kidney, bladder incontinence, iffy kidney infection, and a UTI. My mom just looked at me like oh my god at least we have an answer here. I was told it could be from wearing a wet bathing suit for many hours or holding too long to go to the bathroom. But I knew I never did that, so I just ignored it, smiled and nodded as if it were true. After the antibiotics and prescription steroids I went on for pain, that didn’t stop anything. The discomfort continued and got angry with me. For instance, I was afraid to go in hot tubs due to the severity of my pain in my abdomen and chest area. I felt numb and sick to my stomach. I was claustrophobic and sweating profusely. I was afraid of swimming at the town pool for being too long in the water. I rarely drank fluids because I could barely swallow it without gagging, burping, hiccuping, regurgitation, etc. I was getting weaker, thinner, and tired. I refused a lot like over the counter supplements to help the pain or gain weight. It all hurt no matter what I tried.
These heavy spasms and sharp stabbing pain was never leaving me. I realized no matter what I eat, how much I consumed, what I did, how much I exercised, the pain never left me. I cried myself to sleep, to therapists, to doctors, even to my parents. I felt alone in this case. Now this was just the beginning of all the constant suffering and stress I went through as a child.
