By Rob Schmidt
Most young adults go through a crisis in their twenties trying to figure out how to create a life for themselves, but throw a chronic illness into the mix and those already tough decisions become that much more complicated.
People can get diagnosed with a chronic illness at any age in life and I am one of a growing number of people to be diagnosed with such an illness during my childhood. Just as character and morals change with age, the relationship with your disease changes as well. In my experience, you truly do not realize how much your disease impacts you until you transition into adulthood and experience “real life.”
I was diagnosed with Crohn’s disease when I was five years old. When diagnosed with a chronic illness at such a young age, it’s difficult to fully grasp what that actually means. All I knew was that I was sick, and I needed to take medicine to feel better. My parents made all of the decisions regarding my treatment since I was obviously too young to do so. While I was not physically able to do all of the things “normal” kids could, like play sports or just be a crazy kid, I feel that the effects of my illness at that stage in my life were strictly physical. I was still a hopeful child with lots of love and imagination, and even when I was not feeling well I was still content as long as I was in a happy and safe environment.
The mental impacts would come later on in life.
In high school, I started becoming more involved in my treatment process and it was at this point that my condition started to have more of an impact on my mental health. I began to realize that my condition limited my choices and certain things I wanted to pursue. Still, things were fairly manageable for me. I had time to rest when I needed to, and no serious responsibilities or major commitments. It wasn’t until I was in college that I truly realized just how severe my Crohn’s was and is, and just how much it interferes with my daily life.
While I was becoming more mature and independent, and learning how to advocate for myself, I also began to experience major stress and anxiety on a frequent basis. School became more challenging and time-consuming, and I began to take on more responsibility with internships, research, etc. Despite all of this, I was still able to manage any inconvenience that arose due to my condition. My college offered exceptional accommodations, my professors were understanding as long as I communicated with them, and there were usually resources available such as dieticians, campus social workers, and so on. If I began to feel overwhelmed, I could simply take on fewer activities that semester and focus on what I could handle without sacrificing my health. This environment allowed me to remain confident and hopeful that my future would not be severely limited due to my condition.
That changed once I became a college graduate and was ready to step into the workforce. Suddenly, I was confronted by scenarios that presented challenges and barriers I had not anticipated.
For example, what happens when those symptoms that made my life extra difficult begin to interfere with my work? Instead of skipping class when I’m in a flare, I would now be limited to a certain number of sick days. Deadlines are typically no longer something that can be negotiated. One cannot simply take a break or take on less responsibility with their job for a certain amount of time to focus on recovering. I realized I would have to struggle through some days when I was flaring badly because I understood that flares would come repeatedly throughout my entire life, and I would need to save my leave time for doctor’s appointments or hospitalizations.
Even if I came to the realization that I needed to make a change in my career, my freedom to do so would be limited with a chronic illness. Most young adults have the energy and capability of going back to school and taking night classes while working full time, or working a part-time job while learning new skills and focusing on a side hustle that will make them a better applicant for a different career. People do not realize that it is a privilege to be able to burn the candle at both ends, as they say, and those with chronic illness do not have the freedom to spread themselves thin like that.
Not having to worry about things like health insurance is also a privilege that many young people take for granted. Those living with a chronic illness are much more limited in their career choice because they need to find something that offers good health benefits, and possibly short-term or long-term disability. Taking a risk and leaving a full-time job to start as an intern for a more suitable career may not even be an option for us as losing a position with benefits could cost us our physical health and more. And while many may have the advantage of staying on their parent's health insurance until the age of 26, this is not an option for everyone.
Trying to cope with the magnitude of so many uncertainties presents an enormous challenge for young adults living with chronic conditions and everyone handles it differently.
For a while, I thought that the best solution would always be to figure out how I can fake my way through the fast-paced, high pressures of modern society which seems to reward those who ignore their health and well-being. I have also witnessed many people in the chronic illness community push themselves beyond their limits in an attempt to keep up with society’s standards of grinding at their careers. They jeopardize their health until finally, they get to a point where surgery is their only option for continuing this lifestyle if they are able to continue at all.
On the other hand, I have also seen people achieve their goals and create the life they desire without putting their health on the line. For example, I know someone who worked as an ASL interpreter for many years, which was demanding at times and required a lot of travel. After her diagnosis with Crohn’s, she eventually changed her career to become a successful personal trainer, allowing her to work without sacrificing a healthy lifestyle or risking major surgery. I will not sugarcoat it and say that a transition like this would be easy, but I know it is possible!
I’m telling you all of this because I firmly believe that you can create a life for yourself that gives you the most opportunities to be happy and healthy; you just have to understand that in order for this to happen your decisions need to be driven by your aspiration to thrive and not by your fear of failing. Which I understand is much easier said than done when you live with a chronic illness.
I am still navigating how to create the life I want for myself and trying to figure out what exactly that even looks like. But I’ve realized that trying to fake a “normal” lifestyle is not a sustainable option and refusing to accept that my illness is a part of me only makes my life harder. I intend to face the challenges my illness presents head-on. In fact, accepting this new reality has opened the door to a whole new source of opportunities for me. I sought out the help I needed and was rewarded with support from my family and amazing people through organizations like Generation Patient and the Crohn’s and Colitis Foundation. I may not have it all figured out yet, but I feel I no longer need to suffer from living a life that does not serve me well, and that thought alone gives me hope that I am on my way to success.