My Crohnic Life

Grief & Chronic Illness

by Ashley | Mental Health

First came the cramping, but it was “just” normal uterine pain that came with every little girl’s period. Then came the fatigue, but everyone around me seemed to frequently discuss how exhausted they were, so I was tired too. Then came the bathroom urgency; I had to go, and I had to go NOW, but the thought of sharing this information mortified me into silence.

Then came the red flag, noting I was underweight; in poured the compliments… oh how lucky I was to eat whatever I wanted and still look skeletal in double zero jeans. Then came the stabbing pain; it had to be emotional and stress related though, right? I was a teenage girl who set impossible academic, athletic, social and beauty standards for herself; I traded sleep for straight A’s, stayed late after practices and exhausted myself in trying to be liked by everyone.

Then came the eating disorder pamphlets from my general physician; my sought after physique was finally concerning enough to discuss, but she refused to believe that I ate, no matter the contradicting arguments made by myself and by my mother.

Then, at 15 years old, came the traumatic suffering my brain worked so hard to disassociate from. While the weeks surrounding my Crohn’s diagnosis remain fuzzy, there is one night, quite possibly the worst of my life, I remember too vividly. This was the night I finally realized my doctors had been wrong; I chose to listen to them, instead of my body, like we good little girls were trained to. You know when doctors or nurses ask you to rate your pain on a scale of 1 to 10? This was my 10…11, 12, 13… My family helplessly watched me sob and scream on the bathroom floor. I had knives being plunged into my gut before being viciously twisted around. I was on fire. I could hardly breathe. I crawled. I crumpled. I tried to force myself to vomit. I begged for it to end; I begged to die. How the hell did I end up on death’s doorstep when my biggest concern prior to this event was making my high school’s varsity soccer team?

It took me a long time to process my diagnosis; I had never heard of Crohn’s, or any type of autoimmune disease, until the days leading up to my first colonoscopy, my day of diagnosis (September 13, 2013). My intestines were plagued with hundreds of ulcers and so inflamed that my pediatric Gastroenterologist could barely move the scope throughout. He was stunned; this was the most aggressive case of Crohn’s he had ever seen.

While my insides were waging WWIII, I was playing varsity soccer, taking AP courses, participating in clubsand socializing; he couldn’t fathom the idea that I was even capable of getting out of bed in the morning. Little did I know, I was entering the first stage of grief when it comes to life with chronic illness: denial. A lot has happened in the near 7 years since my Crohn’s diagnosis: two bowel resection surgeries, one gall-bladder removal, new diagnoses, comorbidities, labs, scopes, scans, hospitalizations, dozens of ER visits, specialist appointments, Humira injections, Remicade infusions, Methotrexate (pills then/injections now), Prednisone, countless medications, therapy, 504 plans, class accommodations, and so on. In total, I missed more than half of my school days in high school. On the contrary, in this time, there was also a ton of good and sense of normalcy in my life. I worked summer jobs, traveled within and outside of the country, played three years of varsity soccer; I won a district championship, went to state twice and was named captain my senior year. I graduated high school, spent countless hours with my closest friends, partied, started my first year of college and partied a lot more. I did stupid freshman things, held my friends’ hair back after long nights… the whole “college experience”. As you might imagine, this lifestyle was not sustainable for me; it became a lot harder to stay in denial. To be fully honest with you, it took a night of drinking until I blacked out, followed by one of the worst hangovers of my life to realize it was time to go home; home to my mom, home to myself. One semester away at college, pretending I wasn’t chronically ill, attempting to keep up with my peers brought me out of denial.

It took me to the next phase of my grieving process: bargaining. I spent many years in this phase trying to bargain with a con artist who had no intentions of following through with her side of the deal. My life was consumed by this crook who left me in the dark, in the dust, crippled with anxiety, shaking, afraid and traumatized; however, she taught me one of my most valued life lessons: you can not bargain with chronic illness. Do not try. You will not win.

We have not found a way to outsmart her yet. In the meantime, find ways to cope, to adapt, to nurture; you unfortunately have to meet chronic illness where she stands. So, be brave and show up for yourself; take a seat and compassionately ask her, “What can I do to help you?”. Listen to her needs, and do your best to offer her your support because, honestly, your life depends on it; that’s the brutal, unfiltered truth. We are at the mercy of this selfish bitch right now, but I promise you, we’re working on that; this leads me to the next phase of my grieving process: anger.

First off, I’ll say there is a lot of anger that comes with chronic illness, a lot of it. This is expected, inevitable, common and valid. Be angry. You’ve earned it. However, you have a responsibility to handle and manage this anger in a healthy way; your strategy cannot include bottling it up. I survived an overwhelming number of emotional outbreaks, and so did those around me. I was angry at life, at the universe, at myself, at my body, at my intestines, at my genetics, at my stolen life. I was angry with my doctors for giving me hope and then for later crushing it with their own bare hands. I was angry at the medications that didn’t work. I was angry with my coach for yelling at me for being sick; who called me out for being tired and in pain, for not keeping up, even though we discussed my new medical issues in confidence, where she faked compassion like an Oscar winning actress. I was angry when I needed surgery soon after my diagnosis. I was angrier about my second surgery, during second semester of my senior year, before prom and graduation.

I was angry with my doctors for telling me “we don’t know” and then not providing further resources to help. I was angry I had to hit pause on my education, when my fourth year at Boise State University rolled around. I was angry that my school wasn’t protecting me like they ensured they would with the help of my personalized medical accommodations. I was angry that I felt rushed, misunderstood and unheard as a chronically ill patient in my specialists’ offices; I felt like a nuisance. I was angry that I knew I needed help and no professionals were listening to me. I was angry that I had to pick up the slack left behind by those with the fancy medical degrees, when I had hardly started college myself. I was angry that I was right about several new diagnoses and that my doctors didn’t figure them out first. I was angry that so many doctors put their ego before their patient. I was angrier at the realization that I must not be the only young person dealing with this massive burden.

I was angry. I was angry and frustrated and confused and lonely. I was angry and started demanding more from my healthcare team. As the anger continued to build, I worked with my dad to create a blog; writing was one of my first true loves, and I wanted an outlet for the chaotic mess of emotions that seemed to be controlling every move I made. I had zero expectations for this website, other than a few Facebook shares from supportive family and friends.

A couple of weeks before I launched my blog, I didn’t get angry; I was fucking livid. In November of 2019, I came across an article about a designer’s line at Paris Fashion Week, named Attention Seeker that included IV poles and shirts with SICK typed boldly across. In response to this collection, I posted a picture, on Instagram, of myself at one of my infusions, hooked to an IV pole with a custom made tee, reading: FUCK YOUR FASHION STATEMENT; I was flipping the bird too. I had become so angry, my silence finally broke; this post went viral, and my little personal Instagram account started gaining a lot of attention and followers; I took this opportunity to finally launch my blog.

I started using my website and Instagram page synonymously; I was exhilarated and mortified all at once. I was scared as hell to have my own platform to stand on, with microphones shoved in my face.

But I also felt ready; I was fuming and my anger had all been bottled up like fine wine, aging over the years, in my basement cellar. I realized I couldn’t simply uncork a single bottle of two-buck-chuck, with people looking to me. So, I walked to my basement cellar, bat in hand and bashed every bottle; I screamed and cried and laughed and danced as the glass shattered around me, to the floor.

Welcome to my current phase of the grieving process: acceptance. Acceptance is a never-ending journey; I don’t believe that anyone can accept every single part of chronic illness; how could we when we’re battling our own bodies, our homes? How do you accept an enemy into your home when their goal is to destroy everything in sight, when they promise only pain, suffering and trauma? This intruder has no warrant and there is no caution tape, no wall and no barricade that can keep them out; they will destroy.

As you look at your crumbled home, at what you have lost, you are flooded with emotions. You will begin to grieve. And in this grieving process, you will come to acceptance. You will eventually accept that you can’t change the damage done; you can’t put the ashes back together.

But, regardless, you realize you need a new home. And in building this new home, you need help; you need resources, supplies, a team of trustworthy professionals and a community. This community will be made of similar houses; partially built homes, crumbling on their own foundations, with paint peeling and with fresh embers burning, where a home once stood. Yet these homeowners will lend you their hammers and paintbrushes. They will deliver scraps of wood. They will bring a warm casserole and a hug. They will plant flowers in your new yard. They will hold you while you cry, and they will say, “I know this is hard, but look around you. We understand. You are not alone.” As you look around, through teary eyes, you’ll be introduced to a new member of grief: beauty, and lucky for you, she lives right here, in the heart of this new community. Welcome home.