Chronic illness can be tough and lonely. It seems that most people can appreciate that fact and they know what it generally means to be lonely. But “lonely” takes on a new definition that goes deeper and darker with the personalized, persistent, and relentless class of illnesses considered to be
chronic, or lifelong. When I was diagnosed, I quickly learned this new definition for lonely.
While doctors were considering a diagnosis of Crohn’s disease, and determining a course for treatment, I was at home day in and day out. Symptoms of diarrhea, fatigue, and nausea left me shifting from the couch to my bed and back again all day. To pass the time, I’d watch t.v. and try to figure out how to dig myself out of this frustrating place.
To keep me company one night, my father joined me on the couch for an episode of CSI -- It was our favorite show. In this episode, a small character - an old man who looked and seemed nothing like me - suddenly passed away. The culprit? Crohn’s disease. My dad looked awkwardly at me, I looked awkwardly at my Jell-O, and I let out the tears that seemed destined to come since I first started down this road. I was alone with a disgusting disease, and the first person (albeit fictional) that I got to see with the same diagnosis? Dead as a doornail.
This was obviously unrealistic and dramatic for TV, but I mean, what the hell? This night would go down as my lowest point – mentally – in managing this chronic illness.
The claustrophobic feeling that loneliness left me with - as the couch began to morph around me and my best friends were t.v. characters - was a tough place to be. (If you’re there right now, please know that your pain and frustration is felt by so many others around the world.)
I wish that I had reached out sooner. Wrongly, I thought that my silent strength in loneliness was something to be admired.
Instead, I continued my solo couch mission for months, and as treatment allowed me to improve, I took those couch memories with me wherever I went. I kept them in a secret vault, buried deep in my chest, and I used them to motivate me to stay well enough to engage with the world.
Once in remission, the concern of my disease returning brought fears of pain, hospitalization, and more medications, sure, but mostly I panicked at the thought of being so isolated and lonely again. That fear would follow me until I was able to meet someone else my age with Crohn’s disease.
7 years after my initial diagnosis, but within hours of meeting each other, he shared some of his story, I shared some of mine, and we got to say out-loud, for the first time, one of the biggest annoyances that we both have with this disease (it’s a secret… or offensive). I couldn’t have been more excited.
Since then, we’ve shared dark moments over our biggest fears; we’ve been able to complain about medications, injections, and insurance; and, we never ask each other can you eat that?! There is a silent understanding that we’ll never gross each other out because WE UNDERSTAND IT ALL.
When I worry about pain, feel scared about new medications, or experience frustrations as my arm turns into a pin-cushion at my iron infusion, I have someone to reach out to. I still worry about so many aspects of the disease, but at least loneliness isn’t such a big part of it. Even when I’m on the couch, a bit of empathy from someone who gets it is just a text away.
As I continue to expand my circle of crohnies (or, IBD-ers!), I have to say thank you to those who fight alongside me. From Twitter, to Instgram, to email: you bring normalcy to my once-lonely experience, push me to find life beyond just healing a disease, strength in the face of fear, and a joy and laughter that is the backbone of fighting a life-long battle with disease. I’m proud to call you my friends.
Finding someone to navigate chronic illness with became as vital to this life-long fight as my medications. It’s a treatment that I’ll never go without again.
If you have Crohn’s disease, a program called The Power of Two is offered through the Crohn’s and Colitis Foundation, is designed to help connect people living with the disease.