It's Okay to be Okay

As a chronic illness patient, I have to admit that I’ve often bought into the mentality that if I’m not miserable, I’m doing it wrong. Now, please, understand, that there have been weeks and months and YEARS that my physical and/or mental health has lived in the gutter. Huge periods of time where I made no plans and hardly left my house. Periods of time where my only outings were the doctors office, the infusion center or the hospital. Periods of time where I honestly felt like it might no longer be worth staying alive, because the only life I had revolved around symptoms and flares and Crohn’s disease.

Unable to connect

I’ve been writing about my life with IBD for a while now, and the last few months I’ve failed to connect. I've been struggling to decide on a topic I could write on, one that I could truly, in the moment relate to, one I could truly add to the conversation on. This isn’t because IBD isn’t critically important to me, or because I haven’t had free time, or because I don’t love writing anymore. It’s because during this last year, I have entered a new chapter in my journey with Crohn’s disease.

Remembering the years before this

I became symptomatic in September 2009, and lived in fear and in misery for almost 6.5 years before my disease was labeled as having Crohn’s disease. In January 2016, I received a name for the condition that had plagued my life, my body and my heart for so long. With the diagnosis, I was also granted permission to treat the actual disease that was occurring, instead of just trying to manage the symptoms that had been rapidly destroying me. It took another year before I started on the treatment that helped me find remission, Remicade, but it wasn’t until two full years after diagnosis, and nine years after getting sick, that I started to remember what life outside of day to day Crohn’s disease felt and looked like.

From late 2009 to early 2018, I lived in a space where it became normal each year to spend 20-60 days living inside the walls of a hospital, and attending 80-200 appointments while I wasn’t inpatient, thus requiring that I address Crohn’s disease and the havoc it was wreaking in my life with professionals nearly 75% of my days.

I never thought this would be possible

Today, it’s been nearly a year since my last hospital admission, something I never ever thought would be possible if we’re being honest. Each month that passes since my last hospital discharge date I celebrate, knowing that with IBD, that “lucky” streak of remission could be compromised or end at any time. It’s given me a lot of time to reflect on my journey, what this new chapter means to me, and the way it’s shifted my attitude towards my body & my relationship with Crohn’s disease.

Permission to take on a different role

What I’ve learned, primarily, is that I have to give myself permission to take on or fill a little bit of a different role in the IBD community. I have spent so much time repeating the phrase “It’s okay to not be okay” to myself and others that I recently realized it’s also okay to be okay. I’m at a maintenance place in my relationship with Crohn’s disease. One that includes oral medications each morning and night, IV Remicade infusions every six weeks with port flushes halfway in between, regular monitoring visits with my GI, PCP and Rheumatologist, careful management of my diet and sleep schedule, and several other nuanced reminders along the way. But reminders I’d take in a heartbeat over grabbing a pre-packed hospital bag for monthly admissions.

This year, I’ve had the opportunity to explore new things, including undergoing fertility treatments and becoming pregnant with my first child, doing some traveling, and working full time. In 2019, I’m giving myself permission to share some of the “good” parts of life with IBD that I’ve discovered during this time, in hopes that maybe you, too, can relate. Or that maybe it can give you hope for days down the road.