The 6 Phases of a Chronic Illness

If everything happens for a reason, I am way overdue for an explanation. For years I have struggled with understanding why I was given a disease. In the beginning, I went through the common phase of denial, pretty much rejecting the idea I had anything wrong with me. That didn’t work out very well because it is hard to deny you’re in rough shape when you’ve been in and out of the hospital for a few months, taking fistfuls of medications daily.

Next I moved into the isolation phase. This stage was particularly damaging to my mental health because I went months without talking to anyone unless it was out of necessity. At this time I was in high school and spent all of my time studying or researching Crohn’s disease and related topics on the internet. I even pushed my family away; I wasn’t myself… I was having trouble figuring out who myself even was.

I never dealt with a stage of anger because my feelings mostly manifested as sadness. In general, I do not get angry but rather upset. Instead of feeling mad about my situation, I would just feel sad, revert back into my safe space with limited social interaction, and there began the vicious cycle. Because I am very reserved, I never like for anyone to know I am suffering. My way of dealing with pain, emotional or physical, is to handle it quietly on my own.

When I finally accepted my disease as a reality, I learned to cut myself some slack. I am a perfectionist, which makes it difficult to concede to the idea that because of my disease, things will never be exactly perfect. With support of my family, a lot of soul searching and my ability to find the good in things, I was finally able to stop punishing myself for something out of my control.

The next phase, which I could coin as “turning lemons into lemonade,” is where I embraced myself for who I was, disease and all. I am good at a lot of things and have great sources of joy in my life. Who cares if I have a disease? I started sharing about my health more openly and making jokes about my disease to lighten the mood during sad times. Oh, I have to leave family vacation early because my leg is so swollen from erythema nodosum that I can’t walk? At least that will be a great story to tell of my sister frantically pushing me in a wheelchair through the airport. I even wrote a manuscript about my journey with Crohn’s disease, which really helped me to process what had happened and reflect on the positive that has come out of my negative experiences.

I am now patiently waiting for the reason why this happened to me. The best part about this phase is that I am content in it. It is my sincerest hope that the reason life has thrown me such a big curve ball is to allow me to help others in my situation. Even better, I hope I can help others that aren’t in my situation to understand what it’s like to have your life dictated by something out of your control. My life isn’t easy, but having something so huge to deal with, such as a disease, has made everything else seem conquerable. I can handle what I go through because I choose to do so. I have Crohn’s disease, Crohn’s disease does not have me.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Crohn's Disease

Woman on vacation eating ice-cream

Why I Don't Always Do What's 'Good' for My Illness

I spend every day controlling every minute detail of my life. To call me a control freak is an understatement. Each morning, I take a shower, brush my teeth, then take my morning handful of meds. I stop eating before I’m full. If I want to savor the occasional soda, I open it and leave [...]
woman's face silhouette with colorful circles on head

Ask Yourself This Question If You Worry That Your Life Revolves Around Your Illness

“You are not your disease.” That’s something people like to say when you’re sick. And it’s true! It’s so true. You are not your disease. A diagnosis does not define your character. But sometimes when people say “you are not your disease,” what they really mean is “Please stop talking about your disease as it [...]
collage of two photos of woman in hospital

The 4 Superpowers of a Crohn's Disease Warrior

Every superhero has their obstacle to overcome. People like Steve Rogers and Bruce Banner have backgrounds depicting their own struggles with their health. These were two men, one sick and small, the other overworked and riddled with anxiety. Their experiences lead them to become the heroes we know today, Captain America and The Hulk. And Hawkeye [...]

A Letter to Myself at the Beginning of My Journey With Crohn's

Imagine cleaning your room one day to find a mysterious letter from your future self. Would you dare open it? Would you take your own advice? I’ve always wished “future me” would send me a quick note to encourage me in the right direction, warn me of heartbreak or confirm I made the right decision. [...]