Dealing With Grief After A Chronic Illness Diagnosis

About The Author: Claire Lapat is a senior from Philadelphia studying at the University of Pittsburgh. She lives with post-concussion syndrome, Crohn’s disease, mast cell disease, and other autoimmune conditions. She is a passionate advocate for people living with chronic illnesses and invisible conditions and uses her Instagram @chronicpains.chronicgains to help spread awareness.

Missing Out On Social Activities 

I am twenty-one years old and have had to grieve pieces of myself twice due to traumatic brain injuries and chronic illnesses. I’ve loved soccer since before I could walk and when I turned three, I was finally able to start playing with my local soccer club. I was able to play for some elite programs before my world came crashing down around me. I entered high school while still recovering from my sixth concussion. I decided after ten months that I was done dealing with the concussion. I had been suffering from headaches and migraines since my first concussion at 10 years old and did not believe I was going to fully recover so I lied to my doctors so that they would clear me to go back to soccer.

Two years later, I not only lost soccer, but also a year of school and with that, I lost friends. I prioritized soccer over my social life for years, and all of a sudden soccer was stripped from me. While all my friends were thinking about college, junior prom, driving, and the SAT, I was going to ten appointments per week, wondering if I would ever be able to return to a normal classroom. But I did not feel whole, soccer was a huge part of me and now it was gone. I felt like a piece of my soul had died.

Since I was not going to school, I reached out to one of my former soccer coaches to see if I could help out with one of his younger teams. Thankfully he said yes, and I was an assistant coach for his team of fourth grade girls. I loved coaching and mentoring younger girls. Soccer always empowered me, and I hoped to pass that onto younger players, especially girls. These girls empowered me to keep my head up, to believe I could return to a normal classroom, and to grieve the piece of me that was gone. Opening up to my therapist about how I felt about losing soccer was difficult. I felt the word grief was dramatic. Nobody had died, but I had lost a sport. Nonetheless, he labeled what I was feeling as grief, validating how broken I felt.

More Symptoms And Less Motivation

I also was able to heal through cross country and track. I transferred high schools due to my lost year and began running cross country. As a senior, I had the honor of being captain of the cross-country team. But something was wrong, and it was not my persistent post-concussion syndrome. I began having a lot of abdominal pain, especially after eating freshman year of high school and had ignored it, thinking it was normal, but it started worsening and impacting my life during senior year. I also was too preoccupied by my concussions and I did not have time for another medical crisis, so I just brushed off my pain. I had also broken my hip sophomore year due to malnutrition, and now it was hurting a lot again. I had an MRI of my pelvis which showed proctitis, so my orthopedist sent me to a GI. The GI shoved a popsicle stick up my rectum, causing more bleeding, and told me to just take some stool softener and the proctitis would go away. He told me that I was so young (I was 18), and that there was no point in doing a colonoscopy. In retrospect, we should have demanded a colonoscopy.

I was losing part of myself again. I had not been able to run since cross country season ended. I was becoming more lethargic, my pain was intensifying, and I was just completely over high school. I spent five years (well, two, then missed a year, and then did the next too) in high school and was ready to go to college. In high school, we glamorized college. I grew up watching movies which showed how fun college was, and I heard from friends about how much they loved college. I saw Instagram posts that made it seem like my friends in college were having the times of their lives. And when I got to college, and went into multisystem organ failure, kept getting sick, endured many hospitalizations, missed out on many social events, I continued seeing my friends doing “normal” college things via social media. I lost sight that social media is not reality.

Just Trying To Survive

At the end of freshman year, I saw so many of my peers posting about their 4.0 GPAs while my biggest accomplishment was surviving. In terms of my health, sophomore year was a similar story as freshman year, but in March we went home for spring break and due to COVID-19, we did not go back. Almost as soon as I got home, I was diagnosed with a primary immunodeficiency. My GI symptoms were also worsening, this time to an unbearable level. My immunologist referred me to a GI, and in July of 2020, I was diagnosed with Crohn’s disease. Due to my GI symptoms and recurrent bouts of pneumonia, I had not been able to run consistently since the middle of my senior year of high school. Due to malnutrition from Crohn’s, I developed osteopenia, another running limiting factor due to the risk of stress fractures. The sport that once saved my life, the activity that cleared my mind and helped my anxiety, was slipping away. 

Wearing Your Scars With Pride

As I write this, I am connected to IV fluids with dextrose and potassium, via a chest port. I am rapidly losing weight because I cannot tolerate food and liquids. I do not recognize the person staring back at me in the mirror. The young woman looking back at me has thinning hair and looks frail. She has bump and two scars on her chest, she has scars all over her abdomen from surgeries. This young woman does not look strong, but she is stronger now than ever. This young woman is me. I wear my scars proudly; they are trophies from the battles I have won. I have always identified as an athlete, and no longer looking or acting like one has taken a toll on my mental health. I find myself grieving another lost piece of myself. Sometimes I cannot help but feel as though I am existing and not living. This is not the mindset I want to have but forcing myself to be positive all the time is also not the answer. Sometimes I just need a moment to acknowledge that chronic illnesses, pain, and grief suck. 

Grieving The Old & Embracing The New 

What I grieve most is the fact that my life revolves around everything that is wrong with me rather than what I am good at. I spend most of my time at doctors’ appointments, in the hospital, or undergoing different medical tests. I feel like concussions and chronic illnesses have stolen so many pieces of me that make me who I am. Sometimes I get satisfaction from my academic accomplishments, but I loved soccer and running in a way I do not think I could ever love school. I am working on turning my grief into motivation. I am going into my senior year of college at the University of Pittsburgh. I am majoring in microbiology and doing double minors in chemistry and applied statistics, on the pre-med track.

After graduating next year, I hope to get an MPH and spend time doing research before applying to medical school. Being sick has really pushed me to want to be a doctor more than I already did because of both good and bad interactions I have had with doctors. Healing is not linear whether it be physically or mentally. There are days where I am at peace with where I am and other days where I am angry that my body seems to be failing me. So many people who are chronically ill have experienced grief which I know too well can be isolating. If you are experiencing grief, remember that you are not alone, you are strong, and you will get through this.

 

If you are looking for more resources and support surrounding chronic illness, check out our other blogs:

• Losing My Identity To Chronic Illness
• Working Full-Time With A Chronic Illness
• 10 Things Chronic Pain Taught Me

How has living with a chronic illness or other health condition shaped your identity? Let us know in the comments or email us at wecare@careandwear.com. We love hearing from our community members!