IBD, Anxiety, and COVID-19 Shelter In Place

Living with Crohn’s disease sometimes feels like it’s very own full-time job.

Managing appointments, scheduling labs, arranging and sitting for and recovering from infusions, getting appropriate nutrition, taking and refilling medications, symptom management and access to emergency medical care are just some of the things that are on my mind regularly. The mental and physical pressure of parenting, working, living, and loving with Crohn’s disease are also on my mind. Before the COVID-19 pandemic, I worked hard to manage my disease-related anxiety and the ways in which it could manifest in my life and impact my Crohn’s symptoms.

Life during the COVID pandemic

However, life is different now. And I want to talk about that.

As I sit down to write this, it’s the end of May, and the state I live in has had a Shelter-In-Place order since March 20th, although my household has been in self-quarantine since the very beginning of March.

As news of COVID-19 spread and businesses and providers began changing procedures on the daily to keep people as safe as possible, I found my anxiety beginning to increase. With the new rules and regulations of shelter-in-place, my access and ability to obtain the things necessary to manage my health has been challenged.

Doctors appointments were quickly moved to telemedicine phone calls or video chats, groceries and meal planning had to become exponentially more creative with food shortages along with the difficulty of obtaining grocery delivery windows, routine labs were either paused or looked and felt very different, infusions were moved from infusion center to home, access to emergency care had to be through a developed plan and succinct communication with providers, and well - symptom management, it got harder.

The relationship between anxiety and my Crohn's disease

My anxiety developed around my disease long before it was labeled as Crohn’s. It started with thoughts about if I’d make it to the bathroom in time, if I’d make it to school or work, what my friends would think of me, how to hide my reality, etc.

In the last several years, although my disease has been relatively controlled, my anxiety has lived in the shadows, mostly surrounding the thought “when will the next flare come?”

I have spent a lot of time growing to understand my anxiety, and here’s what I can tell you. Things that are unpredictable, that I lose control over, or that are a risk to my physical or mental health cause me to have anxiety.

I am a person who’s Crohn’s disease symptoms often have caused anxiety, and who’s anxiety was often managed by ensuring I was best managing my Crohn’s disease. Coupled with regular talk therapy, medication as needed, and activities such as exercise, fresh air, and prescribed fun, my anxiety before the pandemic was mostly out of sight, out of mind.

Anxiety around the virus and increased Crohn's symptoms

Today, I’m reflecting on how the quarantine anxiety and anxiety related to the unpredictable nature of COVID-19 has drastically affected my mind and body, and as a side effect, it has also increased my IBD symptoms.

My previously helpful coping mechanisms have changed - without being able to leave my house, to spend time in the presence of others (physically), to go places and do things that brought me distraction and joy - I have had to reinvent the wheel for myself. I’ve had to look at the things that are causing me anxiety, and the way that anxiety is manifesting for me, personally, and how I can work to combat it.

How I am coping and creating a routine during COVID

Here’s what I’ve developed over the last few months:

Fresh air is a huge benefit to my mental health. Whether it’s going for a walk, sitting outside, or just opening my windows, breathing the fresh air has helped me to reset several times.

Routine is helpful. Doing things like showering, taking my medications, writing, video chatting with friends - it’s been really beneficial to do those things in similar time blocks so my body knows what to expect.

This has also been really instrumental in creating and maintaining bedtime and morning wakeup times. Consistent sleep (or rest, for those of us who struggle with insomnia) has been helpful in my levels of energy.

Fostering creativity brings me joy. Whether this is writing/journaling, coloring, using chalk on the sidewalk, editing photos, or having fun in the kitchen, I find that when I spend a portion of my day using my creative brain, I am able to better feel accomplished, connect with my inner calm, and stay focused.

If COVID-19 and Sheltering-In-Place have impacted your anxiety, has your anxiety impacted your IBD symptoms? I’d love to hear your stories below.