My experience managing chronic illness changed forever when I met my first “chronic-friend.” She was beautiful and confident and looked to be
about my age. We connected immediately when our paths crossed at my first job out of college. Within hours of meeting, she pulled out an insulin pump (a device worn by some diabetics to administer their insulin) and I quietly gasped. LOOK! Someone who has medical needs! So what if it’s rude to stare; I was excited. She told me about her experience with Type-1 diabetes, and I blurted out to the first non-medical, non-family member what I’d been dying to say: “I have Crohn’s disease.” I looked at her with more excitement than I should have and I said: “We both have a... thing!”
When doctors started discussing with me the possibility of “Crohn’s disease,” I knew nothing about it. That seems to be a common experience with some invisible illnesses. It took a few months just to remember to spell it correctly, and I can’t say that I had written the word diarrhea since… maybe grade school... maybe never? With this new set of spelling words, symptom and food journal homework, and medication options to review, I found myself preparing for a test that no one else would be taking with me. In a word, the experience would best be described as lonely.
How could I conquer something like this all by myself? Where would I find my strength? I felt gross, lost, and confused on how to make sense of this new normal. No one around me could understand how difficult it was to grasp the “forever” part of this diagnosis. Simple and caring suggestions from family and friends to try to focus on the positive and, “Go for a walk; it’ll make you feel better,” were only pointing out the great divide that now stood between me and the “healthy ones.” Resolving this issue wouldn’t be as easy as thinking positive and going for a walk, not at first, anyway. My heart ached to find a companion for this journey.
Finding this first friend with chronic illness, a person who could appreciate some of its complexities and frustrations, would prove to be a life-changing experience.
It all started with that insulin pump. Maybe because it was one of the few visible aspects of chronic illness that I had been able to witness. I grew to love seeing how she would sneak it into her dresses and pants at work, and then watching the faces of meeting attendees when she would slip it out, fiddle with the buttons, and put it back, all while continuing with the meeting that she was leading. Every time that she did this, a new group of people became accustomed to business as usual around someone with a chronic illness. I grew accustomed to it too. Taking her lead, I worked to handle my symptoms with more confidence; to set the tone for those around me. Dealing with a partial-blockage, my stomach would make a lot of LOUD noises at inconvenient times (in a quiet office setting). I, too, learned to hold my head high when others gave me questioning looks.
When I complained, exhausted and dealing with frustrating aspects of day-to-day life -- being unable to button my pants without pain from severe bloating -- she looked at me with understanding and pointed out that her insulin pump didn’t exactly make her jeans look cute, either. Or that high blood sugar sometimes left her exhausted and un-wanting to engage in social situations. But, often together, we would both walk out the door into the world and made it work. She was constantly shifting my perspective, slowly chipping away at this false idea that no one would ever understand how hard things were for me.
When symptoms became severe enough to force me into the emergency room, it was she who drove me there. She stayed by my side for hours until I could get admitted. She shared her own experiences of hospital stays to quiet my fears. Later, she would come to visit and bring presents and balloons, declaring: “When we deal with the hardest parts of chronic-illness, we should be showered with gifts.” Later that day, when we walked the halls of the hospital, I pushed an IV pole heavy with bags and she wore a mask so that we just looked like two sick girls, together. A picture from that day shows me grinning in spite of my pain and fatigue. Her support helped me find the confidence to know that things would get better.
When she moved away years later, I felt a loss greater than anticipated. I knew I’d miss my best friend, but this was something more. I hadn’t fully appreciated just how important it would always be to have a friend to share this unique and difficult experience in my life.
Sharing this chronic experience with those who truly understand and appreciate the commitment, frustration, isolation, and pain that can come with a chronic illness is a must. While it’s true that some topics may require a shared experience with the same illness, that wasn’t an option for me at the time. It would take 5 years for me to meet someone else similar to me with Crohn’s disease. But, instead, I was lucky enough to find an amazing someone who has managed a life with chronic illness with strength, confidence, poise, grit which proved to be everything that I needed as I learned to develop my own, confident approach, as well.