An advocate works to amplify the voice/s of a typically underserved community. For me, for a long time, that community was the Crohn’s Disease or IBD community. I was diagnosed with ulcerative colitis as a kid. – A diagnosis that would later change to Crohn’s Disease. Over the years, I’ve had quite the “journey” to say the least. I’ve gone through more medications than I can count. Pills. Injections. Infusions. Repeat. When that didn’t work, I was forced to enter the world of surgery. A world that possibly hated me more than the one filled with meds before.
Trigger Warning: This article talks about tough topics including: miscarriage, bleeding, grief and depression.
So what did I do? What anyone would. I complained on the internet. — Slightly joking. — I began sharing my story online. I talked about the things I’d experienced over the years and to my surprise — other people experienced them too! Once taboo topics became jokes amongst myself and my newly found online tribe. It was cool. I never imagined knowing people with my condition and definitely never imagined knowing people who could talk openly about it (at least with me). One blog turned into another and eventually I became not only a partner in my own healthcare, but a partner with healthcare and pharmaceutical companies. I actually got paid to tell companies about my experiences and more importantly, how they can be improved upon for the next patient! #TheDream
This advocacy taught me a lot about myself and it’s really given me purpose. My condition has given me purpose.
In my mid-20’s, I had a miscarriage. In my late 20’s, I had another.
I know my chronic illness has caused me to doubt my body and its abilities. I know my reproductive system is no exception to this rule. Being pregnant the first time just didn’t feel right. I never really experienced symptoms and I just couldn’t see how a body so damaged could create anything good. — And it didn’t. My ultrasound showed two yolk sacs. – One much larger than the other and no fetal pole. – Many weeks past time for one to appear. I waited another week (although I knew nothing would change), then had surgery because my body would not naturally miscarry. I bled for weeks. It was traumatic. – But at the end of the day, there was no actual baby. I could convince myself the pain was invalid because technically, I didn’t lose a child. I lost the makings of a child. But it hurt just the same.
My second miscarriage was different. Although it was suspected I would miscarry early on, I had symptoms. And much to my surprise, a fetus! An actual tiny baby was inside of my womb and it blew my mind. The day the ultrasound tech pointed to the tiny heart flickers was probably one of the most surprising, exciting, easily best, days of my life. Seeing something so small, yet seemingly so strong, gave me hope. I rooted for Lil PB. I just knew she was going to be a miracle baby!
Leading into the next week, I was sitting down on the floor of my living room. My friend was braiding my hair and it felt like I was peeing, but with much more fluid (and no control). I ran into the bathroom and saw a pool of blood. – In the toilet. In my panties. Through my panties. In my pants. You would have thought I delivered. Although this seems like the end of my story, it wasn’t. I had another vaginal ultrasound done in the Emergency Room. The equipment was covered in blood when she removed it from my vagina. It was not only uncomfortable, but terrifying. – But they found a heartbeat, 111.
Speed ahead to the following week and the heart rate was down to 86. Speed ahead again and everything appeared as though I was maybe 5 weeks along (if that)! Everything was tiny. There was barely a pregnancy left and certainly no heartbeat. It was as though my body had gone back in time, instead of forward.
After she told me what I already knew, I was taken to a room to wait for my doctor. The nurse came in to check vitals, but I was determined not to participate. Not mentally at least. I got on my phone. I deleted the What to Expect app. I unfollowed Mommy accounts on IG because I didn’t feel I deserved to be there. I hoped to trick my mind into believing I was never pregnant.
When the nurse left and I had no apps or emails left to delete, I tried to run into the bathroom. – But of course being the awkward bitch I am, I went the wrong way. I ran straight into my doctor! He knew that I knew. I could see he’d been standing near the door, almost as if he was trying to find away to say the words he knew I’d replay forever.
He asked me if I was okay, I nodded and said “bathroom.” He pointed literally right in the opposite direction and I ran in, turned off the lights, sat on the floor and cried. I probably sat on that floor for 10 or 15 minutes. I couldn’t leave. The darkness almost served as a shield from the embarrassment momentarily. All I could think was, “how damaged do you have to be to not be able to do something your body was literally designed to do?” “How could you fail, not once, but twice?” Eventually I left, but needed surgery again because, again, my body wouldn’t pass the pregnancy naturally. It simply kills things and holds them for comfort I suppose.
The day of surgery was the longest day of my life. It honestly felt as if my life was moving in slow motion. I didn’t want anything but to be left alone. If I could’ve set up my IV and registered myself in exchange for not having to deal with anyone that day, I totally would have.
What I remember most is signing papers that basically said everything taken from my uterus would be disposed of. Can you imagine thinking of your unborn child as “disposed of?” I almost vomited. When I spoke with my doctor, I reminded them of my request to have something sent for genetic testing. I couldn’t say what something was. It was a nurse that caught the mistake with the paperwork. I had to then sign more paperwork authorizing them to send the “tissue” to the lab (as opposed to the trash). I thought I was at my lowest, but those papers brought me lower.
After signing, I had to go to the bathroom. I needed a break. All I could picture was the tiny beginnings of a child. My child. Spread across a table at Labcorp. I lose my breath just re-living the thought. I won’t waste your time with the details post-surgery, but I will close with my point.
I can’t be a miscarriage advocate.
Living with Crohn’s Disease only impacts me. My pain is my own. I can advocate for others not to experience that same pain. — But miscarriage is different. That pain was not only my own. It was the pain of an innocent life-form that never deserved a damaged “womb” like mine. It deserved a chance. I can’t continue to talk about losing someone I never got to know. I can’t re-live the blood. I can’t re-live the pain.
I can take all of the physical pain you have to give. I’ve experienced a lot of it already anyway. — But this cut? Much deeper than skin.
I tell this story as closure. I’ve talked about my miscarriage, as I’ve talked about my grief / healing journey, but I don’t wish to talk about it anymore. Some words are better left unsaid, as some pain is better left untouched.