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An image of the bog author in a wheelchair her brother a man with a beard and face mask pushes her down the hall.

I sat at my keyboard questioning myself as I typed out my lengthy medical history- sending updates and providing details I thought I never would about times in my life that I had never shared. I was telling a friend about the alternate life I had led for nearly two decades and never discussed. One of many friends who knew me but only knew the things I put on the table, and I avoided putting a lot on that table. The things that I did not put on that table were the details of my medical life. For over twenty years, my medical and social life were not lives that I ever wanted to overlap. However, in my roles with Girls With Guts, I had started putting myself out there. Strangers on the internet knew more about me than people who I considered friends. So, I had some long-overdue updates I needed (and continue to need) to provide.

Of course, during those decades of keeping my medical and social life as two distinctly separate entities, I couldn’t hide everything. My ostomy, the feeding tubes, and some of the hospitalizations seeped into my social life despite my best efforts. But the details, nope, those were for me and the small handful of people I lived with and by default had to tell. Yet, something amazing has happened to me since I began writing my stories and blogging. I started talking about my medical history. I started talking about vaginal Crohn’s, vulvar abscesses, and recto-vaginal fistulas without much prompting. I met new friends and openly shared my fears for my future and my current realities. As I began to let more and more people into my life, I began to feel less and less burdened. I finally became comfortable with my medical history and found a way to merge the medical and social lives I had always kept separate. I stopped living an alternate reality and just started living.

My inability to talk about my disease in detail led me to be incredibly independent. I put myself through things that I did not have to because I pushed through them. I refused help, I refused care, and I struggled with letting people do anything for me. It was my life, after all, so I had to manage it. Even in the hospital, I would wave away nurses and do as much as possible on my own. I made it my mission to be up the day after every surgery with my bed made, sitting in the chair next to the bed waiting for morning rounds. I would become angry and irritable when even an ounce of independence was taken from me. I was everything but graceful, doing everything in my power to not need another human being. Then Ryan stumbled into my life.

Ryan taught me that I could be strong, sexy, and sick. Ryan taught me that I did not have to do it alone, and he caught me when I tried and fell. During a scary period of disease flare, he carried me up flights of stairs I could not navigate on my own, and we often joked about how he should have gone to nursing school with his acquired skills learned simply from being in my life. From injections to running my PICC, Ryan figured it out. He cared for me in a million ways, and I often didn’t even know he was caregiving. But Ryan was sick too with mental illness and addiction, and eventually, his illness became fatal. By the time Ryan died, I had begun my journey with Girls with Guts. I had started to let other people into my world, and I had opened up, but I was not yet skilled in asking for help or accepting care with grace.

An image of the blog author’s deceased partner sitting in a blue chair in a doctor’s office waiting while reading a magazine.

At the same time I began my journey from silence to advocate, my entire life also changed. See, Ryan’s death was not the only death I have faced in the last few years. First was my Mom in December of 2018, and then less than a year before Ryan took his last breaths, my dad had died. Before Ryan, I had my mom. My mom was my IBD champion. She packed wounds I could not reach, sat at my bedside reading, asked all the good questions, and did all the things moms do. My mom died from Progressive Supranuclear Palsy, a rare fatal prime of life neurodegenerative disorder on December 3rd of 2018. Ryan had already been in her place as a caregiver when her illness took over her body, and due to Ryan’s illness progressing, I also relied heavily on my dad. My dad was my IBD superhero,  and it was he who helped Ryan fill the void in caregiving that my mom left after she passed. Sadly, my dad had Crohn’s related adenocarcinoma of the small bowel, and he died on August 31, 2021. In the wake of these losses, I began to long for someone to tuck me into bed. I longed for someone to bring me a glass of water on a hard day. I missed the help and the camaraderie that only comes from being cared for. I missed all of the caregiving I had refused. So, when I recently had a port placed, I let people love me.

I have never felt that cared for since my Mom first became sick. I had fellow GWGs checking in, sending videos of tips, a waffle maker, and adorable cat videos to distract me when I waited for them to wheel me down the hall. I returned home sore to my neighbors bringing me meals, my landlord and friend offering me rides and anything else I needed, neighbors hauling my compost to the curb, and more love than I knew what to do with. This time, I played it a bit differently than I ever have. When a hot breakfast appeared at my door on a day I probably could have done it myself, I didn’t refuse it. I said, “thank you,” and enjoyed not having to move my very sore shoulder. Instead of telling my neighbor, “no” when he asked to help with my overfilling compost bucket, I said “thank you,” and enjoyed not having to push my limits hauling it down the drive.

Not only did I feel loved, but also I healed faster than I ever have. I was in less post-procedure pain than I ever have been in. And while it is still healing, I can say up until this point that this is the first medical procedure I have had besides routine colonoscopy and ileoscopy that has gone as long as it has without a single complication. I have grown closer to my community and friends, and I have had more grace under pressure than I ever have. I have had moments of anxiety, and it really did not feel pleasant for a few days, but I am on the other side with far less turmoil than I have ever had. I also have come to view caregiving in an entirely different light.

What I used to believe was that my needing care or my medical problems would just burden those around me. I used to believe that no one wanted to hear about how hard it can be for me to live my life. I used to believe that Crohn’s was a source of shame that I had to keep hidden or else, I would be pitied or treated like I had no independent desires. I used to think that IBD was a weakness, as opposed to a strength. Yet, I have learned that all humans have those things they carry, mine just happens to be Crohn’s Disease.  Even more, I know if anyone else in my life was going through something that I would want to care for them. In this way, allowing others to care for me gives them the joy of showing up for someone. No one in my life has an obligation to be in it or to provide care during times of illness. Yet, today they show up for me as I have shown up for those in my life not because I am sick to be pitied, but because I am a human worthy of love. Allowing others to love me, also means that I can recover faster, have fewer sick days, and have a far better life than I have had when I felt that I had to do it alone.

Permission to Throw a Tantrum Advocating For Yourself

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