Living With an Invisible Illness

February 26, 2020. The day my entire world shifted. Before this day my life was the gym, competitions and traveling. My entire life revolved around tumbling and I loved it. I lived to compete. I have worked day in and day out for everything I have accomplished and nothing was EVER handed to me. I thought all of the hardships I had been through were preparing me for challenges I would face as an adult. Boy was I wrong. Everything was preparing me for February 26th.

Something not many people know about me is how sick I am. I have had issues since I was born. Every time I ate I had intense stomach pains and I would be on the ground in a ball for the rest of the day. This would go in phases, so one day I couldn't eat and the next I could eat whatever I wanted. I thought this was normal until I was ten. I was training at the Olympic Training Center and was staying in a room with three other girls. One night after dinner I was in bed curled up in so much pain and I remember being so confused why no one else in the room was in pain. They started to ask me what was wrong and when I told them my stomach hurt they all just said it was probably a stomach ache from the food. But this happened to me every single time I ate. After that I realized that something was wrong. In sixth grade as things started to get worse we decided I needed to go to a gastroenterologist, or GI, doctor.

There was only one in the state of Oklahoma that would see kids under sixteen so we got in to see him as quickly as possible. He wanted to do an endoscopy, a procedure where they put you under and then stick a tiny tube with a camera down your throat and into your stomach to see whats happening on the inside. When he did this he took biopsies, which is where they take small parts of your tissue and examine it. After those were all tested, we went back to see him and he said I had stomach ulcers and I was lactose intolerant. I started medicine for the ulcers and was eating completely dairy free. After months of still getting worse and being unable to eat we went back to the doctor. He said the next step was a very risky stomach surgery. He wouldn't do a colonoscopy because I was so young and just told us to think about the surgery. We ultimately decided not to go through with the surgery because it was very very risky. Which we now know was the right decision. So, we went home and just hoped the medicines would work eventually. We tried every diet possible and I ended up gluten and dairy free for a year. Nothing was getting better.

I was still training and competing at this point and still hiding the pain the best I could from everyone in that part of my life. I was so embarrassed because I felt like after the doctor didn't help I was making it all up. I couldn't put the pain into words and everyone had stomach aches so I just decided I had a low pain tolerance and just had stomach aches all the time. Tumbling was the one thing in my control. Even though some days it would kill me to practice I didn't care because it was in my control when the pain wasn't. By 2018 I was getting to the point I was missing practices and competing was always a risk because some days I could barely get out of bed. But thankfully I was able to hide it from everyone on that side of my life. If I could go back I would be honest with everyone when I was in pain but it was terrifying. Obviously my coach knew and was very supportive but no one else could know. I was too scared another coach or athlete would find out and tell one of the head coaches or directors of the sport. I thought if someone in power knew how sick I was then I would never be picked for a team or an international competition again. I already had to fight for every little thing in the sport, so I refused to let them know anything was wrong. I know how crazy that sounds and no one ever did anything that made me think this would happen, that's just how I felt.

In 2018 I went to a nutritionist and did blood testing to see which foods caused the most reaction in my body. Since a GI doctor couldn't make me feel better we decided that it was all food based and I just needed a diet that worked. So we started with my basic foods that had the least reaction and very slowly added foods back in. The whole process lasted close to a year and by the end of it I did start to feel a little better so we stuck with that. A few months after that I got sick again and restarted the process. This happened a few times and eventually I just stuck with eating my five basic foods. Turkey, celery, peas, cashews, and blueberries. That was it. I ate only those five things for months. Eventually I got sick doing that too and I just felt so lost because there was nothing else to do. Being sick was just my normal. I was just so used to it.

I made accommodations in every aspect of my life for this sickness I didn't know about. There were so many things I did to make sure I was able to compete and still live my life. Things I didn't even realize were that extreme because it was just what I needed to do. 2019 was my first year competing as a senior elite and I was just getting progressively more sick. I was able to make it through the season and made the World Championships team. We were in Japan for two weeks. The first week my family and my coach weren't there. Even when they came the second week we were separated almost the entire time. It was so challenging on days where I physically just couldn't tumble. I had to explain to new people what was happening and why I couldn't tumble when Worlds was the next week. There are no words to accurately describe this kind of pain. So I did the best I could to suck it up and deal with it. I didn't have a choice. Worlds week came and I had a great first two days of competition. The third day was individual finals and I was in a really good spot. At worlds you get an hour of training on a floor in the back and then go on the competition floor and get two warm up passes and two competition passes. My hour in the back started and I thought I was going to pass out. I had the most intense stomach pain ever. I physically couldn't get off the ground. I was training with the best female tumblers in the entire world and there I was in a ball on the floor crying. I couldn't tumble and couldn't believe this was happening. Luckily about ten minutes before we had to compete the pain eased a little and I did a few warm up passes. Me and the coaches had to make the extremely tough decision for me to do easier passes than I was hoping to do. It was the most frustrating thing. To work your whole life for this one day and then be too sick to do your best. When we went on the floor the pain went away and I did two passes that I was happy with.

When we got home I had a few good weeks and felt okay all of Christmas time. The day after Christmas I went to Utah for a fun trip with my friends. While we were there I got really sick and could barely do anything in trainings and struggled to keep up with everything my friends wanted to do. One day it got so bad I ended up calling my mom bawling from the gym and just told her I couldn't handle it anymore. I just wanted it to stop hurting. I was finally old enough to get in to a new doctor so by the time I flew home I had an appointment set up.

Our first appointment with him we set up an endoscopy for the end of the week and got it done as soon as possible. He found erosions all over my stomach and found a bunch of acid and diagnosed me with GERD. Which is basically just where your body produces too much acid. I started new medicines and thought I was going to immediately get better. Then things got worse. I stopped eating and I was constantly throwing up. My stomach felt like it was trying to kill me basically 24/7 by now. I was barely training now but I was supposed to be going to Azerbaijan for a world cup. The day before we left I had to rush to a last minute doctors appointment because I thought I wasn't going to make it through the trip. By now I was on a liquid and baby food diet because those are super easy to digest. The doctor scheduled a colonoscopy for as soon as I got back and told me I could go if I wanted to. So of course I packed up my baby food and blender and got on a plane the next day. It was awful. I'm very glad I went and that I had that opportunity, but I was throwing up multiple times each flight, I couldn't eat, hadn't practiced in a few months and was just completely winging it. My training before I competed I spent running back and forth from the bathroom between every single pass throwing up. I competed two passes and they were not good but I was done.

The week we got home I had a colonoscopy, which is the same as an endoscopy, they just stick the camera up the other end to put it as nicely as I can. This time they found a lot wrong but couldn't say anything until the biopsies came back. The next week I was supposed to be in Indiana for another competition but we decided last minute it just wasn't safe for me to compete in the state I was in. The Friday I was supposed to be there, February 26, 2020, we finally got the call we had been waiting for from the doctor. They said that I had Crohn's Disease, which is basically severe basically inflammation in your digestive tract, and I immediately started on new medicine. I couldn't get in to see the doctor until the next Wednesday so we spent the next five days researching everything we could.

It was this sudden rush of so many emotions. I was so relieved and felt so validated. I thought now I could get better and they will just give me medicine and I will be fixed. I was relieved everyone would finally know that I wasn't making it up. I was so excited to be able to tell all the people that bullied me about my intense diets and baby food. I thought now they would understand. Now they would all know I wasn't doing it for attention.. I really was sick. I didn't know you could feel that many emotions at one time. Then we learned more and more and more. Then I learned Crohn's is a chronic disease. There is no cure. You can get into remission where some people have very few symptoms as long as they watch their diets carefully and stay on top of their treatments. How am I supposed to accept at seventeen that I am going to be sick for the rest of my life? How does this happen? It felt like the universe had just picked me up and slammed me into a brick wall. This was the same time Coronavirus was starting to get bad. So now I have this disease I am trying to accept while also having to accept the fact that I am at high risk because my immune system basically just doesn't work so I had to isolate before everyone else. I went to a dark dark place. I still couldn't eat without being insanely sick so I just stopped eating until my mom would make me. I didn't get out of bed for a while and I was angry at everyone. My mom took me on a day trip to see my grandma and that was a huge turning point for me. I was able to accept my disease and be hopeful about this new path. I was able to realize how lucky I still am. I still have a family that loves me and is doing everything they can to help me. After that day trip I changed my mindset completely. I started doing therapeutic things like painting and reading to distract my mind. I met people online that are around my age that also have Crohn's and made new friends that helped me stay hopeful. They helped me know that I wasn't alone.

I started my long term treatment, self injections, in the middle of this big mindset change. Giving yourself a shot is something no one wants to do, but when that's what you have to do to feel better, it seems like the easiest thing in the world. I have to do one injection every other week for the rest of my life, but if it makes me feel better I will do it no questions asked. Within the next two weeks I went from not being able to walk around the neighborhood to doing video workouts and going to the gym twice a week once our quarantine restrictions were up. Now I am eating a few solid foods and mostly liquids, but getting all my calories and nutrients in. I was losing my hair so I just cut a lot of it off so I didn't have to deal with it. I have improved so much so far, and although I still have a long way to go, I am very hopeful for my future. Crohn's effects everything, not just your stomach. It effects your muscles, joints, eyes, hair, and basically anything else you can think of. This does mean I don't currently know what my future holds. But I am optimistic and know that this is happening for a reason and it is ultimately going to bring me to the path I am supposed to be on. I am still going to be able to go out of state for college if I choose, which is huge. I am still going to be able to compete in whatever I decide to do. I am still the same person I was before the diagnosis.

Crohn's is an invisible illness. Meaning even though I may have looked healthy, I was almost constantly in pain. Use this as a reminder that you never know what someone is going through. This isn't to make anyone feel bad for me or to get any certain response from it. This is for me to get my story out there and raise awareness for this invisible, chronic illness. I don't care if only one person reads this. That is still one person that now can understand Crohn's disease a little better, and have compassion for the people that are struggling with illnesses you know nothing about.