Coping | Daily Life | Disability | IBD
Being a blogger for Girls With Guts for the last two and half years is one of the aspects of my life that I’m most proud of. And yet, I can’t help but doubt myself these days. What wisdom or important message could I possibly bestow on other IBD patients, when my own life remains such a struggle? My Crohn’s disease is in deep remission (thanks to a biologic), the best case scenario for Crohn’s, something I dreamed of but worried would never happen for me. I should be out there living my best life, doing great, right?!
In reality, just getting out of bed is a struggle most days. My entire body aches and throbs from my fibromyalgia–a lovely illness that arrived sometime during my first year of Crohn’s and has never improved. My head also throbs, thanks to my chronic daily migraine disorder–another lovely illness that arrived just under a year ago, in part, my neurologist says, due to hormonal changes that occurred after Crohn’s remission and eating disorder recovery resulted in what I can only describe as going through puberty again.
After 300+ days in a row of daily migraine attacks, I feel pretty hopeless some days. It’s hard to say if that is from the depression that existed long before I had Crohn’s, or if that is a result of the sheer exhaustion I feel after all that has happened to me physically and emotionally in the 5 years since my Crohn’s diagnosis.
Many days involve intense panic attacks. Thanks to my lifelong journey with OCD, I am prone to torturous obsessive-compulsive spirals about all sorts of topics. Lately, my OCD loves to fixate on Crohn’s. “What if my Crohn’s is back and I don’t even realize it?!” my brain screams at me. I check my most recent lab results. “What if the labs are wrong!?” I review my labs again, comparing recent labs to old labs, searching for any sign that my Crohn’s might be coming back. Each lab result I look at only leads me to more questions, and I find myself rapidly falling down a panicked rabbit hole of misery. Some days I can live with the reality that no one can predict exactly what my Crohn’s will do. But other days I get lost in the fear, fueled by my OCD and my traumatic memories of Crohn’s.
Most days, I do some work for my very part-time job and I take a walk outside, walking as much as my body will allow and stopping to notice the world around me. It takes a lot of effort to engage in the world when you struggle with constant physical pain and fatigue, when your body doesn’t feel like a safe place, and when you struggle to relate to people who aren’t living in Chronic Illness Land.
One of my favorite poets, Andrea Gibson, has a quote that reads, “Even when the truth isn’t hopeful, the telling of it is.”
My truths about chronic illness are not what most people would call “hopeful.” I often hear really hopeful stories about IBD–stories of patients who struggled but got into remission and were able to go back to their “normal” lives. I’m glad for those people, and also, that isn’t my story. I don’t know if I will ever stop having daily migraine attacks. I don’t know if I will ever stop having intense fibromyalgia pain. I don’t know if my daily fatigue and IBS-related GI issues will ever let up. I don’t know what will happen to me if my IBD comes out of remission. I don’t know if I will ever “overcome” my OCD, depression, and trauma. I don’t know if I will ever be able to work full-time or have a “normal” life. I do not have a neatly packaged hopeful story to tell. I’m not sure if my truth is very hopeful at all.
But I wrote this blog, not to inspire pity or terrify newly diagnosed IBD patients, but because telling my story is an act of hope, even if my story doesn’t sound hopeful. I wrote this blog for all the other complex chronic illness patients out there. For the people whose IBD diagnosis was a catalyst for a whole host of other chronic physical and mental health problems. For the people who do everything “right” but still don’t feel “normal” again. For the people who seem to get every bizarre complication every time something goes wrong with their body. For the people who other people look at and think, “I don’t know if I could handle what they’re handling.”
Honestly, sometimes I’m not sure if I can handle what I’m handling either. Sometimes I weep, because the grief inside me for all I have lost due to chronic illness feels incomprehensible. I didn’t want this much pain for my life. I didn’t want this much fatigue and sickness. I didn’t want to be chronically ill at all. I wanted to work full-time, I wanted to have an exciting career, and I wanted to have a level of financial stability that our society often denies chronically ill people.
Some days I have no idea how to do this life. No one gave me a welcome packet and said, “Congratulations on your admittance to Chronic Illness Land! Here’s a roadmap to surviving the immense physical, mental, financial, emotional, vocational, and relational challenges that come with getting diagnosed with complex chronic illnesses in your early twenties!”
No one gave me a roadmap, but telling my story gives me hope. Because truth-telling about chronic illness is what connects me to all the other people out there living in Chronic Illness Land with me. I know I’m not the only one living this life. Blogging for Girls With Guts has brought me to other people who understand what it’s like to carve out a life for yourself in the midst of brutal and exhausting symptoms. Together, we tell our truths, hopeful or not. We do not have to sugar coat shit for each other. We talk candidly about the hardest moments, the funniest moments, the most embarrassing moments, and the moments that would absolutely horrify the average healthy adult. And somehow, this space of raw truth-telling has become the most hopeful aspect of my life.
I didn’t want complex chronic illness for my life, that’s for sure. But what I did want, what anyone wants, is to be accepted. And I have found acceptance through the sharing of my seemingly unhopeful chronic illness story. And I hope that, by writing this blog, I can create a little acceptance for others also struggling with the realities of complex chronic illnesses. Maybe we will never get back to our old selves, to our former lives, to what we envisioned for ourselves before our unwelcome admittance to Chronic Illness Land. But maybe there is hope in accepting that, and in coming together to create roadmaps that lead us to joy, laughter, friendship, and whatever else we dare to dream up together.