Everybody has something. A hardship. Something that makes them not perfect, because, as many say over and over, nobody is perfect. My “something” changed my entire life. My “something” is what I call a hindrance in my life. My “something” is a chronic illness. I was diagnosed in late 2021 with Functional Abdominal Pain Syndrome (FAPS). FAPS sounds like what it is. It is essentially, constant stomach pain. Physically, I have known nothing but pain for the past two years. 

To back it up, I’ve had stomach issues my whole life. It wasn’t something I really thought about until I realized that other people don’t feel the same pain I do. Until I realized that I was sick and have been for a while. At one point I thought I was lactose intolerant. Throughout middle school, I would occasionally suffer stomach aches but as time went on it got more and more frequent. In seventh grade, I told my parents that I had developed sharp pains in my sides. Going to the doctor’s office was not an option due to quarantine. My parents were worried about appendicitis so we scheduled a consultation on the phone. The doctor asked me many questions, and was able to rule out appendicitis. But she wasn’t able to determine what the cause of my pain was. It was a dead end, but she wasn’t worried about me. 

Then, in eighth grade, we revisited the issue since it hadn’t gotten better. I went to a Gastroenterology (GI) specialist. My GI didn’t know what was wrong with me either. He ran blood tests, he tested me for Crohn’s Disease, I had an ultrasound. But all tests came back normal. I was put on a number of medications to see if anything would help my pain levels. While I was seeing my GI frequently he had me journal my pain. I wrote down when I experienced anything. Meaning my “stomach aches” as well. As my sharp pains went away I started noticing more and more abnormalities with the rest of my body. Eventually I realized that it had gotten to the point of constant pain. That was when I was diagnosed with FAPS. 

If you were to look up FAPS you’d see statistics, and so much medical terminology that it would scramble your brain. Long story short they put a name on a barely studied disorder. They diagnose it based on a criteria of symptoms. The two main symptoms are constant or near constant stomach pain and loss of daily activity. It is supposed to be a psychological disorder more than a physical one. It has less to do with the gut and more to do with the mind. Basically my mind is playing tricks on my body.

It is like phantom pain, I can feel it but it’s not actually there. Every part of the body has pain receptors and the nervous system regulates them. For someone without FAPS, the brain sends signals to the gut about its functions. My brain sends signals to my gut but my nervous system misinterprets it into pain, because my gut has many sensitive nerves. 

FAPS is associated with anxiety and poor mental health. When I am distracted or relaxed I am supposed to feel less pain, when I am stressed and tense I am supposed to feel more pain. My doctor recommended cognitive therapy as the number one fix. But I have been in therapy for over a year and while I’ve benefited in other areas of my life, it has been unhelpful in this one. While my mental health and anxiety fluctuated, my pain stayed the same or got worse, never better. Exercise was recommended as well, and while it makes me feel better mentally it makes me feel worse physically. The basic diagnosis of this chronic illness just doesn’t fit me.

I’ve seen two professionals and they have both told me they don’t believe my condition is physiological, the basic definition of FAPS. I don’t know if I was misdiagnosed or I have a different variation of FAPS that I wouldn’t be able to find through research.

What Google doesn’t tell you is that FAPS affects my whole life. Physically it isn’t only pain. I have nausea and headaches. I can’t sleep at night due to physical discomfort. And over the past two years it has only gotten worse, I’ve developed more and more symptoms. Mentally it’s hard. It is hard to be happy when it feels like your body hates you. When it feels like your body is trying to kill you from the inside out. Emotionally it affects the relationships in my life. I miss out on things, because some days I wake up feeling terrible and there is nothing I can do about it. Most of the time I force myself to get up and go to school because of attendance. It gets worse after lunch and I wish I could go home and lay down. But I can’t. I have to maintain my grades and my attendance but as soon as I get home all I can do is rest.

When I explain to people how the pain feels I model it in levels. There is the lowest level, when I wake up in the morning with nothing in my stomach. It is the time where you don’t feel hungry or full. I can block out the pain because I have gotten used to it. It doesn’t register to me as pain because it is my normal. It feels like a mild stomach ache. The next level is when I eat or drink anything. If I have a glass of water the pain increases. The highest level is when I eat certain foods like pasta, fish, anything acidic, etc. And then sprinkled in between levels is when food or drinks doesn’t cause me pain but pressure, anything on my stomach. Constricting clothes. Laying down on my stomach. Putting my computer on my stomach to do school work. If I sit with my knees against my chest it causes pressure on my stomach. When I am curled up and not laying straight it causes me pain. Anything you can think of.

I get one of three reactions when someone finds out. There is the most common, pity. It is by far my least favorite because after they find out I am then seen as fragile. People fall over themselves to get me what I need and while it seems like the perfect way to react. It isn’t. I don’t feel like a person and more like a problem. An obstacle in everyone else’s lives. I am not thought of as a normal person, I am defined by my condition. The other common reaction is ignorance. It isn’t much better than pity but people forget about it, they forget about what affects my everyday life. It isn’t taken into consideration when pertaining to me. They don’t take it seriously, they don’t take me seriously. The last, my favorite, reaction is understanding and curiosity. There aren’t a lot of people who understand what I go through and I am glad about that, but there’s no greater joy than meeting someone else like me. Someone who knows what it is to be sick. Or meeting someone who cares and wants to know more about it, those who ask me what I need going forward from them, and those who check in but don’t suffocate me with their worry. 

Healthy people are the luckiest, but most don’t realize it.