Remembering Ourselves Through Self-Compassion

Ah, the glorious “Routine Labs” that come with this IBD Life. The MD places their orders with a click of a button and suddenly you have what I like to call “healthcare homework” to complete and submit within a certain timeframe.

CBC. CMP. CRP. ESER. Calprotectin. LFT. (Sometimes there’s more than this, sometimes less.)

Poke, prod, stick.

Drink the fluid.

Provide the sample.

Grapple with the walk of shame whilst clutching a brown paper bag. (Seriously, why haven’t they come up with a better, more streamlined way to do this?)

Try to keep your head up, try to keep your dignity, all the while struggling internally to maintain a sense of self.

Does this sound familiar to you, IBD sibling? If so, I’m glad you’re reading this, because my hope is that we can create a space of safety here. We all know that feeling. Give the blood and wait. Refresh the screen to see if the results are in.

Has your heart ever skipped a beat when you get a notification that “you have a new test result to view?” More often than not, we get these results before our doctors do and that can lead to trying to interpret values without understanding what they mean in the larger context of our healthcare picture.

Do you consult with Dr. Google when trying to make sense of what a concerning value can imply? So do I! Do you ever feel your stomach sink when a value isn’t quite what you had hoped? Or get debilitating anxiety to the point where your mind starts spinning like a hamster wheel? Me too!

I know we have not met, but I’d like to take a moment to tell you hello. My name is Ann. I was diagnosed with Crohn’s disease in January 2020. Great timing, I know. The world went sideways in the wake of a global pandemic and I went right along with it. In the last almost 6 years, I, like most patients with a chronic illness, have had to come to grips with the ways Crohn’s disease has destabilized my life. I am writing this in a blog format, but I hope that it comes across as more of a love letter than anything. A love letter to my community: to my siblings with Inflammatory Bowel Disease. No matter who you are or where you are in this journey, I’m honored to be in community with you. I see you as family, and the world needs YOU, your perspective, your voice, and your light.

Somedays, I feel my light has gone out. Between navigating an increasingly oppressive healthcare system, jumping through manufactured barriers to access my treatment, and following through on all the physician’s orders, there are days when my sense of self goes right out the window and all I am in this moment is a medical record number.

But, dear friends, we cannot allow the system and the values (or lack thereof) tied to it shape how we view ourselves. Learning to parse out an identity that is separate from my illness has been crucial for me to maintain a sense of autonomy and self-worth. It’s not easy. As a recovering perfectionist, my stomach drops when I see my lab values everywhere but within normal limits which often leads to a never-ending symphony of thoughts such as: “I’m not normal”; “There’s something wrong with me’” or “Everything about me is wrong.” “What does this mean for me? Why can’t I stabilize? Why are my inflammation markers doing…this?” Most of us live with some form of medical trauma or medical related PTSD. It’s hard to establish a sense of safety and sense of self when some weeks, months, even years are a stockpile of “What else is going to go wrong?”

But underneath the weight of the healthcare rubble is me. Underneath the weight of the “abnormal lab value” is you. We have to remember that.

One of the tools I’ve cultivated over the years is self-compassion. It takes time, it takes intention, and in my case, it took a while to learn in therapy. But through accessing this resource of emotional insight, I have learned to not attach myself to my lab values. The CRP says NOTHING about the relationships I pour my heart into, the people who pour themselves into me, or the gifts I share with the world. A colonoscopy doesn’t tell the story of my worth. The cranky provider (who is probably burned out and wants to take it out on me through a dismissive ten-minute visit) in no way means that I am lesser, that my words have no significance, or that my concerns have no value.

Self-Compassion is the lens that shows us where the illusions are by asking us to consider what is and what is not ours to carry. It shows us the need for community, patient-centered care, and grassroots advocacy. It shows us that the frustrations we navigate when trying to access what we need isn’t because we aren’t worth caring for—it’s because we are existing within systems that were not built to care for us.

So, dear IBD sibling, I hope that in the midst of my words you will find some kindred connection—and know that you are not alone in this fight. I hope you show yourself compassion—with compassion you find clarity, and with clarity you find knowing—and that you will know this: you are not inherently wrong, you are not your lab value, and you ARE worth caring for.

I look forward to hearing it.

With love and gratitude,

Ann

• About The Author

Ann Parker was diagnosed with Crohn's disease in 2020. Since then, she has become a dedicated advocate for IBD patients and remains committed to raising awareness for Crohn's disease and Ulcerative Colitis. When she's not writing, she enjoys reading, going on adventures with family and friends, and taking pictures of her dog, Charming Charlie. She is currently trying to find a decent spot for biscuits and gravy as a southern transplant living in the PNW. Stay tuned. A needle in a haystack has to shine sometime.