IBD | Voices from Girls with Guts
I wanted to write something for IBD awareness week that captured what it is to have IBD. I spent time reflecting on the past twenty-eight years of my life with Crohn’s and tried to synthesize some clear lessons. I talked with other women who have IBD, and I dived into others’ writing, experience, pain, and joy of living while sick. Then before I typed a single word for this blog, I entered a stubborn thirteen-day depression falling into the traps of “it’s not fair” and “why,” and that changed everything I planned to write.
There is no doubt about it, a truth echoes in my FB messenger inbox; all the many conversations I have had with others with Crohn’s or Ulcerative Colitis have shown me that a lifetime of IBD makes one learn hard life lessons way before one’s peers. Those of us who have walked this life of IBD have learned how to do many seemingly impossible things. After all, like my email, messenger inbox, and walls of the many online support groups I belong to say, a lifetime of IBD is a lifetime of procedures, tests, medicines, and becoming way too close with one’s physician’s receptionist.
For me, a lifetime of IBD means that I have drunk some truly disgusting stuff, endured some incredibly painful stuff, and have had a lifetime of humiliation, beginning in Kindergarten when I had my first Crohn’s related bowel accident. Like so many others, my lifetime of IBD is a lifetime of missed events, being an inconsistent and unreliable friend, medication side effects that often make me miss IBD, and spending more time in bed and random bathrooms than I care to admit. It is no wonder that there is a lifetime of emotion right there with the lifetime of hardness.
When I think of IBD, a range of emotions comes at me. Reading other people’s writing and listening to their stories shows me that there are universal feelings like anger, disappointment, and fear of coming out of remission or being newly diagnosed or having a new symptom/disease manifestation. Then there is the constant, never-ending intimate relationship we all form with grief. We grieve the loss of food and the loss of ability that comes with the appearance of new limitations. We grieve who we used to be when we were healthier, and we mourn the people we could be without IBD. But with this lifetime of lessons and emotional and physical pain, there is also a lifetime of joy.
Just like we collectively grieve, we also collectively celebrate many of the same milestones along the way. The gift of waking up healthy and feeling good after weeks, months, or years of flare. The amazing freedom when after days, weeks, and months of constant never-ending pain, it just leaves sometimes only for a brief period, and sometimes for much longer. But like the dark of night leaves with the rising sun, so too does the pain, and with its absence comes relief in one’s bones and soul. With every challenge, obstacle, and in each part of this life of mourning, there is also immense joy. We are always learning, always adapting, and still finding that we are stronger than we could have imagined.
Being sick provides an easy excuse to lean into defining and creating a life with only the most essential things in it. I make room and time for those things that truly give me joy, and if I get no joy, then I change. It is not perfect, and it is always messy, but in adapting and evolving to lean into life’s pleasure, I am a far better human than I otherwise would be.
This way of life requires constant evaluation of what I want for my life, the edges of my limits, and the ever-changing landscape of what IBD feels and looks like for me. I have fallen quite a few times trying to figure out where that edge of my limit is. I am sure I will overreach and fall again because, more than anything, what I want and what so many of my sisters and brothers with IBD want is to have the ability to show up for our lives most of the time. But just because somedays I may over-optimistically take on too much, I am not a masochist, and I am not a failure, and neither are the strong women and men I know with IBD.
Over the next ten years, I hope, as a community, that we continue to embrace being gentle with ourselves. In the world of medicine, it is easy to feel like we are failing. To feel like I am not doing enough or trying hard enough. In the support groups I belong too I often read “I failed this med…” So many posts in those wonderful supportive communities begin with “I failed…” or “I was trying so hard and then” or “they say this is my fault,” and the voice inside of me screams every time, “girl, you failed nothing. The medicine failed you. The system failed you. Our society failed you. But you, you failed nothing.”
Over the next ten years, I hope to lean into the strengths I have because I am sick; my ability to endure, overcome, empathize with other marginalized and sick people, and live well while my body works against me. Even more, I want to learn how to be as gentle with myself as I am with my sisters with IBD. I want to find the words to tell myself, “it is ok, your weight is a symptom of your illness and is not a personal failing,” “it is ok, your bloodwork results have nothing to do with who you are as a woman,” “it is ok, sometimes you just gotta’ roll the dice and eat that sweet corn on the cob.” I will never accept Crohn’s or IBD. It is why I fight for a cure, but I can accept, and I do accept that for me, IBD has shaped who I am in both amazing and not so amazing ways- how can it not? Over the next ten years, I am gonna’ work to embrace the amazing and drop the rocks of shame, guilt, feeling less than, and anger; I so hope that you consider joining me.