Daily chronic pain has been a part of my life since, well, elementary school. That’s the last time I remember not feeling bad every day. I was a perfectly normal, although often carsick, kid up until about 6th grade. While my peers were shaving their legs and getting their first bras, I still looked like a little kid.
Middle school isn’t easy for anyone, but when you look like a member of the Hanson Brothers circa 2000 and go to school feeling sick every day, it certainly is no picnic.
Every doctor seemed to give my parents the same advice: “Your daughter is anxious. She has a nervous stomach.” It went as far as for my pediatrician (yes, at 14 I still saw my male pediatrician) to explain my symptoms away as a result of “being a late bloomer”. I felt utterly misunderstood and angry. There was no way this was in my head.
At the beginning of my sophomore year of high school, we finally got some answers as to why I was feeling so awful. With the help of a wonderful (female) physician, I tested positive for Celiac Disease. My Italian mother was at a loss… gluten was practically part of our family crest. Little by little we learned about eating gluten-free (before it was a thing) and within the next couple of years, my mom and two sisters would also be diagnosed with Celiac.
I remember feeling so relieved when I received the Celiac diagnosis because it felt like an end to a long and painful journey. However, it was just getting started. The rest of high school was rough. Even eating gluten-free I still felt tired, sluggish, depressed and had frequent stomachaches. My digestion was a hot mess. I just ignored feeling sick because I was so exhausted. I wanted to be like everyone else, and I could easily hide my discomfort and symptoms. My weight constantly fluctuated ( I gained 20 pounds the first year I started eating gluten-free) and went through puberty in 6 condensed months (goodbye padded A’s to ample C’s).
In college, it was harder to keep up appearances of feeling good. In high school, I could go home after school and hide out in my room with a hot water bottle. With communal living at college, it became even clearer how different I was from my peers. I was tired and nauseated all the time. I started to exercise more often and noticed my pain increased, and I could hardly eat. It went from manageable to unbearable which resulted in some scary doctors appointments (You might have cancer!) to an unplanned leave of absence from school my senior year.
During my leave of absence, my doctors were stumped and performed exploratory surgery. This surgery was life changing and resulted in the diagnosis of severe adhesions (scar tissue) from a prior appendectomy and mild endometriosis.
In the four years since my surgery, a lot has happened. I still have some chronic pain, but it’s less than ever. I’ve tried almost every alternative therapy known to mankind and a wide spectrum of therapeutic diets. In the process I’ve learned so much about my own body and health in general.
My hope in sharing my experience is that I’m able to help someone reach the conclusion of “what the heck is going on?!” earlier than I did. That being said, once you have a diagnosis, it’s not all butterflies and rainbows. Every day is a constant struggle between taking care of myself and doing what I want to do.
What you can control is your attitude. I spent years in medically unexplained pain and felt like a crazy person because I had no answers. Post diagnosis, I learned that the emotional toll of looking healthy yet being sick is almost as hard as the pain itself. Invisible illness is extremely difficult; there’s so much at stake all the time and the rest of the world has no idea.
I get it; I get you, and we’re in this together!