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What It Feels Like to Come of Age With a Chronic Illness

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If someone had asked my 18-year-old self how I envisioned my life at age 24, I know for certain how I would have answered: I would be a physical therapist, have a stable job in a hospital or clinic and be living with either a long-term boyfriend or husband. I would have a beautiful apartment and maybe a cute dog to round out the whole idealistic picture. I would spend my vacation time traveling and continue to have a close-knit group of friends. At age 18, this “ideal” future seemed entirely obtainable.

Looking back, I truly thought I knew how my life would pan out. However, it turned out that life had very different plans for me. Unbeknownst to my innocent 18-year-old self, my life would be turned inside out and upside down over the course of the next six years. During a pivotal time in my life when I was meant to “come of age” — to transition from a child into an adult, from a girl into a woman, from a state of dependence to one of independence — I was simultaneously going to be dealt the most challenging experience of my life.

Dealing with a serious illness at a young age forces you to grow up fast. There are many times when I wish I had been able to experience my late teens and early 20s as most young people do — as an exciting, fast-paced adventure. I wouldn’t mind having had a much more “carefree” young adulthood.

However, though my experience with coming-of-age with chronic illness was not something I voluntarily chose, it has ultimately been the most transformative process that has occurred thus far in my life. I love the person that it has helped me become — a resilient, powerful woman with an unshakeable sense of self. I love the wonderful people that it has brought into my life — people who I couldn’t imagine being without. Finally, it has also shown me the enormous depth of kindness and compassion people are capable.

I used to think that I was alone, that I was isolated in the fact that I was only 18 (then 19, 20, 21 …) and had been dealt the terrible hand of “chronic illness.” I didn’t think other people my age could possibly be facing challenges the way I was. I was so young. I was supposed to be vibrant and reckless and have an invincible quality. I felt like the loneliest person in the world. 

Then, at age 21, I began to meet others like me, and it felt like a revelation. I now know I am only one of many young people who have come of age with chronic illness. I am just one of countless young adults who has had to transition into adulthood while simultaneously dealing with an unbelievably challenging illness.

When I began to listen to other young adults’ stories, my heart opened immensely. With these incredible people, I felt as though we already had an unspoken bond before we had even really gotten to know each other in depth. I learned through these interactions that I wasn’t alone in terms of the emotions I felt surrounding being a young twentysomething with an illness. We were all struggling to accept the “lost years” of our teens and early 20s and reconcile our “health lives” with the rest of who we considered ourselves to be.

I have come to realize that one of our first common bonds we share is that we all have lots of questions. We all have so many questions about life: Will I ever get better? Will I ever finish college? Go on a date again? Be in a long-term relationship? Get married? Have children? Sometimes it was difficult to even consider these questions, and sometimes when we let the questions start flowing, they start racing through our heads so rapidly that we feel out of control. I have personally found I cannot focus on these questions. I have to let them go. I will live my life, and the answers will appear as I move forward.

A second common theme I have found amongst us young adult with illness: We feel as though we have lived two different lives: the “before-illness life” and the “living-with-illness life.” Perhaps we have come out the other side and are in the “post-illness Life.” This is what I sincerely desire for all of us.

Personally, my “before-illness life” took place from my birth to age 18 and approximately 8 months. This first life was happy and innocent. I had answers to my questions — life seemed orderly and clear.

My “living-with-illness life” began the first time I woke up in my college dorm and felt like my body had been taken over by an unseen force that was intent on destroying me. Goodbye order, goodbye “ideal future.”

Sometimes I have days where I look back at old photographs from the first life. I analyze these pictures intently, like a historian. Photos of me all dressed-up going to homecoming and prom. Images of me running during cross-country and track races, other ones of me looking so happy while on vacation with my family.

For most people, looking at old photos brings back nostalgia. When I look at these, I feel as though I am looking at a person who has died. I mourn her loss. It is still raw and stings like pouring alcohol on an open wound. The poor thing had no idea what was to come. I want to rescue her and save her from her demise. I feel like I didn’t love her and appreciate her enough, and that makes me so incredibly sad.

But then I realize she had to depart in order for my new self to be born. I look back and realize what I learned from her. I think for many of us, the best thing we can do is look back on our first lives for what they were — hopefully happy childhoods and some fun experiences and memories.

Our second lives can be considered a series of lessons that are gradually shaping us into better people. And our third lives — the lives in which we emerge reborn from our health experiences — those are the lives in which we have the power to become whatever we desire. 

A third major issue for those of us forced to come of age with chronic illness is the fact that we have to walk in several different worlds. There is the “health” world, perhaps the high school or college world, the world in which maybe we are lucky enough to be somebody’s boyfriend or girlfriend, the world in which we still have passion for a certain athletic pursuit or hobby and the world in which we are supposed to be young and vibrant and free. How do we walk in all these worlds at once? How do we reconcile the fact that our bodies are struggling and need extra love and care, along with the fact that we want to be “just like everyone else” our age?

I don’t yet have a perfect answer to this question, but I know many of us are asking it. Personally, I walk in several different worlds. There is the health world in which I am immersed not only for the purpose of caring for my body, but also for the purpose of my career. This world can be kind of weird, to be honest, and I can only talk about it with people whom I really trust.

In this world, I eat a healthy diet, take supplements, do different treatments for managing my health, avoid alcohol like the plague and have a strong aversion to staying up late — not exactly habits of your typical 24-year-old. Don’t even get me started on how impossible this makes dating feel! And then there is the world in which I am young and adventurous — the world in which I rock climb, ski, hike and spend time in nature.

Depending on which world I’m in, I may feel fragile, or I may feel strong and powerful. Usually, I feel all at the same time. One of my challenges has been to integrate my disparate worlds. It was awkward at first, but it is slowly starting to look more and more beautiful. My time in these worlds has given me the courage to pursue my dreams and time to think about what I really want out of life. It has allowed me to create a richer and more fulfilling life than I would have had if I had not come of age with a chronic illness.

Coming of age with chronic illness is no joyride. We have challenges that many people our age cannot even begin to imagine. But have no doubt, being a young adult with a chronic illness is an experience that will change you. No matter who you were at the start, you will emerge on the other side as a different person.

For those of you out there going through this, please know that this time in our lives is pivotal. The fact that we have experienced illness now, rather than in middle age or later adulthood, means we can use the valuable lessons being served to us for our advantage. Our lives can be all the richer due to what we have gained in knowledge and wisdom at this young age.

I liken this process we are going through to that by which a caterpillar transforms in to a butterfly. Our “before-illness Lives” were our caterpillar phase. We were happy and carefree.  Our “living-with-illness Lives” are our chrysalis phase. And our “post-illness phase” is our butterfly phase. We will all fly someday. We have to be alone, and in the dark, and be patient in our chrysalis phase to eventually emerge as a new being. This chrysalis phase takes huge amounts of energy and transformation. 

Let us continue moving forward and heal, so that we can share all that we have to offer with the rest of the world when our time comes to emerge and fly.

Follow this journey on Rock On Nutrition.

Lead photo source: Thinkstock Images

Originally published: September 28, 2016
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