30 Jul 2014
Today I have a treat for you from one of my best friends, Eliot Dreiband. Eliot and I met over 11 years ago at a camp for kids with Crohn’s and Colitis. We spent each summer together at camp growing up and I’ve been fortunate enough to have her in my life since then. Even when we’ve gone long stretches without seeing one another, or talking to each other, it has always been one of those rare friendships where she just “gets” me. And boy does she get my struggle with my illness.
When I asked her to write a little something for my blog, I knew she’d write something beautiful. She’s always had a way with words, but what she wrote rocked me to my core. I couldn’t be more proud of the woman she’s become and more thankful that she’s allowed me to share this essay with you.
Sick of Being Sick : Or How I Learned to Stop Worrying and Love My Bowels
By Eliot Dreiband
When I sat down to write this essay I originally had this funny image in my
head: I am standing at a podium in a nondescript school auditorium facing three
rows of blurred faces seated in folding chairs.
“Hi, I’m Eliot and I have Crohn’s Disease,” I say to the faces.
“Hi, Eliot,” echoes back at me.
“I was diagnosed with Crohn’s Disease when I was twelve years old. It
is an incurable, autoimmune disease that affects your gastrointestinal tract……
I was diagnosed with Fibromyalgia at age nineteen. Fibromyalgia is a disorder
characterized by widespread muscle pain and fatigue. I have…”
I am almost monotone in my description of my incurable genetic illness. It’s
come to the point now where I’m almost sick of talking about Crohn’s disease. This
clingy, needy, temper tantrum-ridden gollum has attached itself to my body for
over half of my life now and I’m a little sick of it. But I have to talk about it. Crohn’s
Disease is something I deal with continuously and it’s clawed its way into all aspects
of my life.
From the basics: my saying no to those delicious-looking chili cheese fries
(“Your recipe has beans? Can’t. Thanks anyways!”). To the routine: scheduling
treatments, doctor’s appointments, and prescription refills like an octogenarian.
Only you’re twenty-four and have no idea how health insurance actually works.
To the embarrassing: Going home sick from work because you can’t stop feeling
nauseous (for no known reason) and you don’t want to throw up in front a client
(this almost happened…twice).
Now add Crohn’s to dealing with insurance companies, job decisions,
traveling plans, relationships, etc. Oh and add two other diseases, because these
auto-immune illnesses tend to be systemic. See? It goes on and on. You’d get sick of
talking about it too. But I have had this illness now for over half my life, it is second
nature and has influenced too much of me.
One of the reasons I’m sick of talking about my illness is because it’s really
important to me not to complain about too much about myself. Everybody’s got
something. So by all means complain a little. But no one person can claim all the
world’s suffering and there are a hell of a lot of people who have things worse
off than me. I try to save my breath for more interesting conversations than my
But I also like to think that I’m that getting sick of talking about my diseases
because I no longer define myself by them. I was diagnosed with Crohn’s Disease
as a pre-teen, a veritable identity-molding age. I had blood tests, doctors, and
insurance companies telling me that I was unhealthy and abnormal and then I had
to turn around and relay that information to my friends and teachers to explain my
absences and symptoms. Needless to say, it led to a lot of conflicted feelings about
my identity, my weaknesses, and my strengths. And oh boy, do I have the teenage,
angsty journal entries to prove it.
I have spent a lot of time and energy making sure that people do not view
me as vulnerable because of my illness. At 5’3” I am already aware of my stature
limitations, but I don’t like the idea of that people assume less of me because of
the cards I was dealt. What might be intended as sympathy can come off as pity.
But therein lies the rub. Having a disease does make things in life harder. It can be
painful, exhausting, frustrating, and embarrassing. A disease is a stressor both to
the inflicted and those around her. I hate that I have been such a financial burden to
my parents, though they would not think twice about it. And I can’t even count the
number of times I’ve had to cancel or postpone plans with friends because of sudden
symptoms. A good excuse or not, my disease’s negative repercussions don’t make
me feel stronger as an individual.
So what does make me feel positive about my illness? I like to think it had a
pretty big effect on how I choose to live my life and interact with people. Rebecca
and I first met at a camp for children with Crohn’s Disease and Ulcerative
Colitis. We were thirteen, newly diagnosed, and terrified. But being around other
children with these illnesses alleviated my anxieties and let me just relax, have fun,
and be a kid. I returned every summer to the Painted Turtle Camp until I was old
enough to volunteer – and I still volunteer with them to this day. The Painted Turtle
Camp’s mentality and values alongside my experience dealing with an illness have
made me a more empathetic and socially motivated person. In college I changed my
major to Human Development and Human Rights and in the future I’d like to work
in the social justice sector. I’m even leaving in a few weeks to go volunteer in Buenos
Aires, Argentina for three months with a children’s rights organization.
I guess that’s when you know that you have wonderful friends and family -
when they can joke about your incurable illness without making you feel like less of
a person. The gollum-esque creature I like to think of as my negative symptoms is
my friend’s interpretation of my disease. She talks about Crohn’s Disease with
absurdly anthropomorphic phrasing. According to her my “immune system hates
me and therefore has declared a mutiny” on my bowels. My brother has mentioned
my “pill popping habits” loudly when I pull out my medications with breakfast in
public. Having an illness can get a little too serious. I’m glad I have people to help me
bring a little levity and laughter to the matter.
Nelson Mandela said that, “it all seems impossible until it is done.” Now, I’m
almost 100% positive that Nelson Mandela didn’t have Crohn’s Disease, but lucky
for me his message still applies. Having Crohn’s Disease and Fibromyalgia is a pain,
quite literally. But I try to give myself a break while still moving forward. Having
wonderful people in my life who inspire and love me keeps me positive, happy, and
healthy. They not only remind me to take my pills and avoid popcorn, but that I am
human and allowed to be a little vulnerable.
Lastly, I leave you with this picture of Eliot and I from camp circa 2006. I have to say that if one thing makes me feel positive when it comes to my disease, it’s in the incredible gratitude I feel for the people that it’s brought in to my life and the way they inspire me to be a better, stronger person.