I was headed to the basement of the student union for a meeting about Teach for America, a program that a friend had recommended to me. I saw a girl from my sorority perched on a chair across from me. She smiled and waved in acknowledgment. I sat a few chairs down. We were in the same sorority, but we were not friends. At least, not yet.
The two of us each had friends who, because of some dorm roommate issues during my freshman year of college, could not stand to be in the same room as one another—which is pretty much why we’d never talked. Her name was Em, and this specific day during my sophomore year would be an important day for both of us.
A few days earlier, I’d announced to my sorority that I was going to be granted a kid’s wish. I’ve never been very secretive with the fact that I have health issues, and I’d even given a speech in the student union about my need for blood products, to support an upcoming campus-wide blood drive.
However, I’ve never been really into discussing the complexities of my life on a one-on-one basis. This is what made the moment she sat down next to me to disclose all of the health issues she had been going through a very surprising experience for me.
Em has been through a lot. Until then, I’d never had a friend that had experienced health complexities at the level I had. Actually, I don’t think I had a single friend who had a chronic health condition that I can remember. I think Em felt that she needed to tell someone about what was going on in her life, and I’m glad in retrospect that the person was me.
That night, she told me she had been diagnosed with Crohn’s disease, and over the course of a few years, she’d lost more and more of her GI tract due to the aggressive nature of the condition and multiple failed treatments.
Shortly after we started hanging out, Em needed a course of chemo to try to suppress her body’s attack on itself. She needed IV nutritional support, as well as blood transfusions. It was rough to see her go through that and lose her strawberry blonde hair. She was impossibly tough, though.
Somehow, I served as encouragement for her. I have this habit, no matter how sick I am, of trying to do my hair and makeup. I’ve been in some not-so-great moments of health, applying eye shadow while lying in a hospital bed. It makes me feel better. I mean, I know I look pretty awful at times, but these little things make a difference for me. Em took to the makeup and hair (when it grew back in) routine, and she really felt it helped her, too.
I ended up transferring colleges and moving away during the middle of my junior year. Em and I would Skype every so often, and we texted frequently to keep up with what we both were going through. We were each other’s biggest cheerleaders and support systems. She, with my encouragement, got her nose pierced, and I followed that same path a few years later.
Em’s tenacity is unbelievable. She had to adjust how many classes she took every semester due to her health issues, so it took nearly seven years for her to complete college. Still, she stuck with it.
She visited whenever she could. Shortly after her chemo-induced Crohn’s remission, she started driving the couple of hours it took to trek to the-middle-of-nowhere Wisconsin. I thought she was crazy because she was sick all of the time, and I assumed the travel was really only making things worse for her. But oh, no: Em knew exactly what she was doing.
Neither of us had really dated due to our circumstances, but Em found the person who would become her husband in that small town. I remember her telling me how her health condition bothered her far more than it did him. Then Em took to running marathons, and she listed me as one of the people she was running in honor of during her first few.
Em is now in law school, to become a patient advocate for others with health issues.
I am grateful every day that Em came into my life when she did. She allowed me to connect with another individual who, though she might not have been going through exactly what I was going through, could connect to my world and allow me to connect to hers.
I think that there comes a moment in the life of a person with a chronic illness when you realize you aren’t alone. For my fellow National Youth Leadership Institute (NYLI) co-chair, Alex, that moment happened when she was a counselor at Camp Bold Eagle.
There is a popular ice-breaker game in which a person tells two truths and one lie to a group, and the group has to guess which statement is the lie. When she had played this game previously, Alex had always made “I have a bleeding disorder” one of her statements.
But in this situation, that would no longer work. She’d entered an alternate world where bleeding disorders were normal and not an interesting fact or quirk. It allowed her to really think about what it was that made her unique and different, outside of having a health condition.
This fact echoed again when Alex recently went to France for the World Federation of Hemophilia’s World Congress. She had the opportunity to meet many other young adults from all over the world. This could’ve easily been a daunting scenario. She wasn’t sure where to begin to create that common bond, that familiarity.
It was very simple, though. Each individual was there because of his or her bleeding disorder. Even though they were from different countries, each was dealing with very similar circumstances within his or her life. That was a building block to finding further shared interests and ideas.
In the end, Alex reflected on how often there really is something that can connect you to someone else, no matter how different your lives may seem. It can really be life-changing to know that others are dealing with a similar set of circumstances.
In Alex’s own personal life, she feels that her dad provided her with a different outlook on dealing with a chronic health condition. Alex’s dad has lupus, and he’s had three hip replacements. She finds it inspiring that he is pursuing a PhD in his 60s. And her dad, even after all he has been through with his health, says he wants to climb a mountain with her one day.
Since meeting Em, I’ve made friends with many others who are also dealing with chronic health conditions. Alex is a great example of this. Both women are amazing individuals whom I have connected with not only because of our mutual health experiences, but also because we just have fun hanging out like normal-ish twenty-somethings.
I’ve always found it interesting that for those with chronic health conditions, the approach to living is sometimes so very different. I don’t know if it’s a “living with gusto” situation, or if it’s because of the hand we were dealt in life. But sometimes, we just see the things that others may see as impossible, as possible.
It’s easy to feel alienated by the draining process of doctors’ appointments, tests, and hospitalizations. However, when you get the opportunity to spend time with others in similar circumstances, it can open your eyes, and you realize that there are so many people who can empathize with the road you’re traveling. Sometimes it’s nice in life to feel a little less out of the ordinary.