Max: Finding resilience through the pain of chronic illness
A good campfire, s’mores, camp sing-alongs and kayaking. These were some of the things I was looking forward to on my way to camp for the first time.
Do you know what I wasn’t looking forward to? The worst-case scenario I encountered on the way to camp.
We were driving down the highway when I realized that I needed to go to the bathroom—badly! My camp counsellor–who was one of the nicest people–brought me to the front of the bus and asked the driver to stop. But we were on the highway. There wasn’t anywhere to stop.
While the driver looked for an exit, I started to panic. My stomach was gurgling, the need to go was getting worse, and we weren’t getting any closer to finding a bathroom.
My camp counsellor tried to distract me with some games. And at some point, while I was counting all the white cars that passed us by, I realized that I had pooped my pants.
I was humiliated!
Eventually, we made it to a gas station where I could change, but the mark it left on me that day goes beyond the mark it left on my underwear. That was the day I became “that kid.” The one who is a little too much, who doesn’t fit in and causes problems.
But really, people just didn’t understand me and what I was going through.
Surviving years of chronic illness
I’ve had digestive issues all my life. I was chronically constipated, sometimes I would overeat, other times I would struggle to eat anything at all, and there were many times when I was in a lot of pain. This went on for years and years, but no one could tell me what was wrong.
And what’s worse, it felt like no one believed me either.
People would tell me that this was anxiety, that it was all in my head, and that if I took better care of myself, I wouldn’t feel this way. They made me feel like it was my fault like I didn’t deserve to be helped, and I started to really hate everyone around me. I even started to hate myself. I was so overwhelmed, I was in a lot of pain and I didn’t know what was going on with my own body. I couldn’t see a future for myself and was worried about what I would do if this didn’t end soon.
After years of being in pain, I was finally diagnosed with Crohn’s disease, which is an inflammatory disease that primarily affects your digestion. I was given some medication to help with the pain, but it didn’t really help. I still kept getting sicker and I kept going back to the hospital looking for relief. But no one would take me seriously.
One night, the pain got so bad, I thought I was dying. It was like nothing I had ever experienced before. My body was out of control, I was having violent twitches as a result of not being able to eat enough and I was scared that I was going to get seriously hurt.
I went to my local hospital, but the nurses dismissed my cries for help. They told me that it was all in my head, blaming what I was experiencing on my autism, and committed me to mental treatment. The doctor wouldn’t run any other tests, even though I was in unimaginable pain, and they wouldn’t address any of my symptoms. I was even tied to my bed and told that I wouldn’t be released until I stopped acting psychotic.
It was so degrading. I felt like an animal, an object like I was being punished for needing help. I was starving, dehydrated and alone – they didn’t contact my family and I was too afraid to ask for anything myself. When the psychiatrist finally came to see me, he could see that I wasn’t having a mental episode, and released me.
23 days later, I was on an operating table. I went to a different hospital with the same symptoms and, finally, someone heard me. It turns out the pain I was experiencing was due to a blockage in my intestine and my only option was to remove it through surgery. Finally, FINALLY, I was getting the help I needed.
Reframing pain and finding resilience
I was really angry about how I was treated for a long time. There were so many times when I thought it would be better to give up than to deal with this pain because it felt like I wasn’t ever going to get the help I needed. I was miserable and just didn’t want to be alive anymore.
But at some point, I started to change the narrative. I actually found solace at a camp for people with Crohn’s and Colitis disease. When I told the camp nurse my story, she helped me realize that I was telling myself the wrong one. I had been telling myself the story of what happened to me and what was done to me, but the real story is how I survived. I kept going back seeking help, even after how I was treated, even after so many people told me “no.” I kept fighting for that help and I wouldn’t be here if I hadn’t.
Today, I’m still dealing with Crohn’s disease, but I have better doctors and support. I still struggle sometimes with my physical and mental health, but I think back to how I felt then and how I feel now and I’m so proud of all the progress I’ve made. This experience has given me the confidence to trust myself and my instincts because that’s what saved me. It’s given me the courage to look at other areas of my life and advocate for myself in a way I wasn’t able to before. I can see now that I never really wanted to end my life – I just wanted a better one.
I don’t want to let my struggles define me or prevent me from doing the things that matter, because otherwise, what’s the point? I get to do things that the younger me would be so proud of. I could never fully see a future for myself, but now I do. I can see myself being the person I’ve always looked up to, and I can look back on these moments and be grateful for the lessons I’ve learned.
Even though I still get depressed sometimes, I’m not going to let those moments break me. I’m not going to let them stop me from living my best life and doing the things that matter to me.