Besides the pain and losing functionality from progressive disease activity, one of my greatest challenges with chronic illness has to do with who I am.
I’ve always been a planner as well as an introspective person and before I got sick I would typically ask myself questions on a daily basis. These questions could range from something as simple as what will I do after work to the more existential what do I want to do with my life.
In my quest to figure out who I am and how illness has impacted me, I decided to ask myself the same sorts of questions and compare how I would answer before and now.
What will I do after work tonight?
Before I was sick I might consider watching a movie, reading a book or I going to a bar with friends —but I would definitely know that I’d first be running at the end of my work day. Running was my sanity, my stress relief, and my lifeline. Running gave me power. Running gave me strength and the ability to stand up under the pressure. Running gave me wind in my sails and the ability to hold on tight until the storm passed.
Now, I live with chronic illnesses and pain that never turns off. Running is no longer something I can do. Instead, every day I battle and struggle just to get up and do basic things like putting my feet on the floor, walking to the bathroom, sitting on the toilet without falling, taking a shower and putting on clothes. My 3rd specialist just confirmed that even if my disease activity were way better than it is now there is no way I will ever run again. Never again will I have the ability to run to handle the pressure of everyday life. I mourn this loss.
What do I want to be when I grow up?
Before I was sick, I was in a crazy and wild place. I was healing from some bad choices regarding the kind of people I had in my life. I had met and fallen in love with my husband and his two beautiful babies. I was suddenly a new mom to two toddlers, never having chosen to have children before I got together with him. I had a good job and a new family and it felt like the world was my oyster. I was going to work my way up at work to become a grocery manager, possibly even rising higher in the ranks than this with my company. I wasn’t rich by any means, but we both worked full time and made decent money. Life was opening up before me like a beautiful and rare flower.
Because of disease, I had to completely alter the course of my life. I had to leave the grocery department and move over to being a cashier. However, I did go back to school and recently graduated with a Bachelor’s degree in Information Technology, with hopes of becoming a software developer who has the flexibility of work to handle my disease as it fluctuates. I hope this career choice will give me a solid work-life balance that includes time with my kids and my husband and creating art.
It took everything I had to work full time, go to school full time, and handle having a family with small children while battling chronic illness. I don’t think I have ever done anything harder. Unfortunately I couldn’t do everything. One thing a developer has to do is create programs outside of class to showcase what he or she can do. I was never able to do this because of my health. And, now that I am done with school, my health has taken a turn for the worse and I still have not been able to do so. Now I sit in limbo, unable to get a job because I cannot showcase my skill, knowing my loans are coming due and aching because a better life for me and my family is just outside of my reach.
Keeping up with the Joneses?
Before I was sick I never compared myself to others. I valued who I was, where I was, who my friends were. Even though I did not have an easy life—my father was an alcoholic and drug addict who dodged responsibility—I didn’t waste my time or energy focusing on what others have that I don’t. I was never jealous with envy and if I saw that someone had something I wanted, I just figured out a path to get there and accomplished it. I didn’t spend my time angry at my past or even angry at my present situation. I had also gotten to a place in my life, as a woman and as a person, that I didn’t compare my body to anyone else. I had accepted me. I was happy with me. I knew what my flaws were and I was okay with them.
Now, I have lost so much to rheumatoid arthritis and fibromyalgia. But instead of taking it out on others, I learned from the struggles of my childhood and have worked to be a better mom than my mother, a better parent than my father ever was. I am responsible, kind, and loving almost to a fault. I genuinely care for those around me and try to make the lives of the people I love better. I picked up the pieces of a devastating family life as a kid and figured out how to navigate this scary, ugly world in a way that brings goodness and light back into it. I do this in spite of my disease.
Asking myself these questions and comparing how I felt before I was sick to how I feel now was an unsettling exercise. At first It showed me just how much I have lost so much to this disease.
But before I could spiral into utter darkness with thoughts that I am my disease, I heard the echo of some very powerful words my long time best friend recently said to me:
“You are an artist first and you just happen to have RA.”
She went on to tell me that I am so much more than my disease. She reminded me of my intelligence, of my power, of my capability. And, in that one moment she made me realize in a much deeper way that I am an artist, a mother, a woman, a person who strives to be better in this life. I am a powerhouse with so much to offer. And, finally, that powerhouse just happens to have RA and fibromyalgia.
She reminded me: I AM NOT MY DISEASE!
So, I think the answer to the question of What Now? is that I will morph and change, twist and turn on this hike through life. There will be good and there will be very bad moments. But, through it all I will know in a powerful way what my friend had planted in my soul – I am not my disease. I am just a woman who happens to have several chronic illnesses.
I am not my disease. And neither are you.