This Is What No One Tells You About Living With A Chronic Illness

I do not mourn what I have lost but what I have never known.

At nine years old, I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis—infection of the bone. Doctors would tell us how rare it was and that I was one in a million. What they failed to tell me was how isolating and life-robbing the illness would be. They would fail to tell me that this illness would be a domino effect of more illness and torment. It was not until years later that these side effects would truly begin to weigh on me.

The teen years are meant to be filled with fun and self-discovery, but mine were filled with hospitals, needles, doctors, and pain. Pain not just of the body, but of the mind as well. From fourth grade and on, treatments that did more harm than good were a normal occurrence. I would grow to hold my arm out for the needles without fear of the pain. Pain had become an old friend of mine. I mourn the loss of being able to be a kid. I mourn the person I might have become had I not been ill during those transformative years. I struggled with passing one class while my classmates struggled with which college they would commit to. I struggled with my own will to continue living and felt I would not even survive past the age of twenty. I struggled with the anger and resentment I felt, constantly questioning what I had done in a past life to be filled with so much pain in this life. High school did not turn out to be the time of my life.

I graduated by the skin of my teeth and was accepted into a college in Arkansas. This was fantastic news, but I was still just a ghost. I was lost and going to college because I thought that was what I had to do. Escape occupied my mind. A new town and a fresh start. This was meant to be my chance of trying to get back what illness took from me. What I failed to understand was that being alone in a new town while still living with a chronic nightmare would cause more damage. The isolation came back with a mission and it succeeded. I was alone in an apartment and off campus with no money or transportation. Living with roommates I never saw or interacted with. Coping in a healthy manner was not a familiar concept for me and I was drowning. I was desperate for some air and looked forward to the upcoming Spring Break. I thought that maybe all I needed was time at home with my mom and everything would be okay.

Everything was not okay. Doctors appointments came and went, leaving me with more grief and disappointment. All I could think about was how living with this pain was not an option anymore. The physical pain, depression, exhaustion, and anger. My mind couldn’t handle it any longer and I broke. Balling my eyes out to my mom and begging for her to make the pain stop. Begging her to help me because I couldn’t do it anymore. Telling her that she needed to take me to the hospital because I did not trust myself. She took me in and for the next two days, I slept in a shared room at a psychiatric facility. Those two days changed me completely. The look on my mom’s face when she took me in will never be forgotten. I could see her heart and soul were shattered because she was helpless to fix her child. Helpless to take my pain away. Desperate to make it all better.

From that moment on, I decided that things needed to change. After choosing to leave Arkansas, I did the hardest work I had ever done. I chose to not let my illness drag me down any longer. Instead of focusing on all I lost, I looked to all that I had gained and all I had within me from the beginning. I realized there was already strength buried deep within me. I just had to figure out how to dig it out and use it. Using my own power and new found motivation, I have chosen to let myself be happy and successful. I have come to terms with the fact that illness will be a permanent part of my life. It is just up to me to make the most of it.

I still mourn what I will never know, but I also choose to fight for the life I have ahead of me.