Taryn’s UC Journey

This post was brought to you from Tina Aswani-Omprakash of Own Your Crohn’s as part of Girls With Gut’s Community Connection.

“I think I might be at the start of a partial obstruction.  What do I do?”

The words I shared with my husband in late March 2020 weren’t rhetorical.  It was more like I dropped a mini bomb into an already stressful situation.

Even though I’ve had a series of partial bowel obstructions over the years, this time felt different. We were at the beginning of the pandemic.  At a time when merely stepping outside seemed dangerous, a trip to the ER felt terrifying.

In that moment, I was asking for much more than just advice.  I wanted – no, needed  – reassurance that regardless of what was happening with my body – it would be ok.

Like he has so many times, my husband sprang into action.  There is a set of questions I know to ask myself when I have the signs of a partial obstruction, but it’s hard to remember them when I am tired or in pain.  He remembered.  He walked me through the questions:

What have you eaten recently?  Nuts, chocolate nibs, or any of the past culprits that get “stuck” [in my abdominal scar tissue]?  Are we moving less?  Do we need to start walking more to make sure things keep moving through your system? What do you need?

He sat patiently as I tried to piece together what could be happening with my body in that moment. He held my hand as I struggled to breathe through the pain and figure out what steps I could take at home to avoid this escalating into something that would require a hospitalization.

We were lucky.  It took nearly a week to resolve, but together (with my doctor) we re-worked my plan for how I ate, drank, and moved in order to keep me out of the hospital and safe at home.

Fifteen or even ten years ago, this exchange would not have been possible.  Even though I have lived with IBD and obstructions for years and have been with my [now] husband for two decades, I struggled for a long time to learn how to manage my relationship and IBD.  I had to unpack the messy interplay of internalized ableism, racism, and sexism that made me believe that depending on someone was a weakness.

It would be hard not to come up with the flawed perspective that my IBD made me a burden.  The messages are everywhere. Three months after I had this experience, the New York Times published a piece about IBD titled “Should I Dump Him Because of His Medical Condition?” in which the author stated “you don’t owe it to anyone to accept that burden; indeed, if you think you don’t want such a life, you have a good reason not to enter into the relationship.”  Much has been written about the flaws of that perspective, which I will not cover here.  I will say that it is that exact belief that left me thinking for years that asking for help or acknowledging my needs would make me less worthy.

Layered on top of that ableism, are the explicit ways that living at the intersection of racism and sexism harms the physical and mental health of Black women. A number of articles detail the ways in which workplace discrimination based on race and gender and ongoing racial trauma can impact Black women. Moreover, many Black women have reported feeling “pressured to act like superwomen, projecting themselves as strong, self-sacrificing, and free of emotion to [cope with] stress.” Quite literally, I felt like I could not ask for help.  I thought it would hurt and impose a burden on my marriage. And, for years I struggled to fully include my (then college sweetheart) into the part of me that lived with IBD.  I just wanted it to be separate from us, which feels very odd to write because IBD is very much a part of me and how I experience the world.

Luckily, this dynamic started to change as we developed as a couple and I began working on unlearning a lot of my beliefs related to disability and race. I have sought and am a strong proponent of talk therapy and regularly use the tools that I have learned to manage my mental health. I also regularly talk to people about my experiences navigating work and personal relationships as a Black woman with IBD. I now see my husband as one of my greatest allies. I also believe that our interdependence and the deliberate ways in which we navigate and explicitly support each other’s mental and physical health is the foundation of our love and partnership. We openly talk about many of our needs and my IBD is just one part of that.  We are by no means perfect, but I do think we are stronger because of our willingness to tackle our learned ableism and the ways that racism affects us individually and as a couple.

And I encourage all of us minority girls with guts to do the same: to truly own our conditions and push the boundaries of ableism and racism to understand what we need for ourselves and what we need to make a partnership work successfully.

For further reference, one of my go-to sources on successful loving relationships for both the able-bodied and disabled, please checkout #DisabledLoveIsBeautiful by my friend Maria.

Taryn Mackenzie Williams lives in the District of Columbia with her husband, Reggie. She was diagnosed with ulcerative colitis at the age of 5 and had a total colectomy and two-part j-pouch surgery in 1994. She developed enteropathic (IBD-related) arthritis in her early thirties. When she isn’t working, she likes to arrange flowers and come up with themes for her family’s weekly Zoom get-togethers.