Grieving the Life I Imagined – and Loving the Life I Have

Emily after her graduate school graduation!

Before I was diagnosed with inflammatory bowel disease, I saw my future going something like this… attend college to pursue a teaching career, graduate, and become an elementary school teacher. Meet a nice guy, get married, and have two – three kids. We would move to somewhere like State College, PA, get a nice house, and have cats. I would have a successful and fulfilling teaching career. We would travel a lot as a family and spend quality time together. Once I was diagnosed with IBD, this dream started to slip away from me. Luckily, in the more recent years, I’ve had this “ideal future” start to become reality. But it took a lot to get back here, and my life has not gone how I imagined at all.

To start off with, the life I imagined myself having did not include having a chronic illness. I was diagnosed with IBD when I was 17. I have chronic migraines too, irritable bowel syndrome, and a chronic bladder condition called interstitial cystitis. Getting diagnosed with IBD and then having all of these other medical problems changed my life drastically. I never imagined I’d be attending dozens of doctor’s appointments each year, relying on lifelong medication, and managing the ongoing challenges that come with it all. Plus, there is a huge emotional toll that comes with all of this. My mental health has suffered on and off due to being chronically ill. My anxiety has been worse due to being chronically ill. The emotional toll can be just as bad as the physical one. I grieve a life of being healthy. I grieve a life of being able to not rely on medication to help me feel well. I grieve a life of not worrying about my health each day… a life that didn’t consist of managing my various diagnoses.

I started college in 2018 and graduated in 2023. The plan was to graduate, move to Pittsburgh, and get a teaching job that year… but IBD had other plans. Around the end of 2022 I started to get very sick from a flare because the biologic I was on stopped working. I was in and out of the hospital all of 2023 and extremely ill, so that meant after graduation I did not get a job. I didn’t move to Pittsburgh; I had to push my life plans back to 2024. However, being as sick as I was, getting a full-time teaching job and moving to Pittsburgh didn’t pan out for 2024 either. I started substitute teaching part time in the spring of 2024, though, so at least that gave me something to do in my field. 2025 came quickly, and again I felt like I wasn’t well enough to get a full-time teaching job or move, so here I am again this year substitute teaching. In all reality, I took 2024 and now 2025 to get my health in order. I’m much better than I was in 2023, but it took such a toll on my body that the recovery process has been so prolonged.

I have grieved the years I lost when I could have been a teacher, working in the classroom with students like I wanted to do starting in 2023. I never imagined that I would graduate college and then not get a full-time teaching job right away. When I saw my classmates around me getting teaching jobs and decorating their classrooms, I was jealous and sad. Overall, I have grieved 2023 as a whole because IBD took that entire year away from me.

The loss of my independence is something else that I grieve deeply. I’ve had to rely on others more since I was diagnosed. While I’m actively working toward regaining some of that independence, it is difficult. I’ve always been someone who needs to be in control – sometimes to a fault – and getting diagnosed with a chronic illness has stripped away so much of that control. I grieve the loss of stability and predictability. The hours I have spent at medical appointments, undergoing tests, being in the hospital, and managing all of this feels like stolen time… time that I could have used differently if I wasn’t chronically ill. One of the hardest losses is the trust I used to have in my body. My symptoms are unpredictable and ever-changing. I once felt confident in my physical capabilities, and now I live with caution. That loss of trust is something I continue to grieve.

Despite the life I have lost and won’t know because of facing a chronic illness, I still get to say that I love my life now. Since I didn’t move to Pittsburgh in 2023, I’ve had extra years living at home with my parents, and family is the most important thing to me. My mom and I have taken multiple trips together over the past years that couldn’t have happened otherwise. I’ve taken this extra time at home to spend as much time as I can with friends that will then be two hours away from me when I do move to Pittsburgh next summer in 2026. In summer 2024 I started my master’s program (fully online). I can proudly say that I graduated in summer 2025 with a master’s degree in education. I took the time I was using to recover and turned it into an opportunity to get my master’s degree. Another positive of life not panning out how I imagined is that I reconnected with my childhood best friend, Laura, in summer of 2024 when she moved back to our hometown. If I had been living in Pittsburgh, then we most likely wouldn’t have reconnected, and having Laura back in my life is one of the best things that has happened to me.

Although I’ve experienced unexpected plot twists, I’m happy with the life I have now. I’m going to marry the love of my life, Adam, in July 2026. I’ll be moving to Pittsburgh then and finding a full-time teaching job at an elementary school. Adam and I plan to adopt a cat when we get married, and, in the future, have a child. We have dreams of traveling the world together. Just because all of this didn’t necessarily go according to my original plan or my “ideal” timeline doesn’t mean my life is any less good.

So, I can grieve the life “ideal life” that I once had in my mind, like the simplicity of a healthy body, a more predictable future, and the smooth path I thought I would follow after graduating college. But I can still confidently say that I love my life now. I have an incredible support system: a family that I’m very close to, friends who are there for me, and my wonderful fiancé. I’ve grown in ways that I didn’t expect – ways that I probably wouldn’t have grown in if my life had gone “according to plan.”

Emily with her friend Laura.

My future might look different now than I originally planned, but I’m still excited for it. Although some of my original plans (teaching career, being a mom, and traveling) might prove to be more difficult with my health issues, it doesn’t mean it can’t happen. There will be ups and downs along the way, but that doesn’t mean the life I once imagined is completely taken away from me. Having a harder life doesn’t mean that my dreams aren’t possible. In the end, maybe life isn’t supposed to go exactly as we imagined. Even when life throws you for unexpected twists and turns, it can still lead to a life full of love and everything that matters most.

Born and raised in Pennsylvania, Emily was diagnosed with severe Crohn’s Disease with complications in 2016 at age 17.