What happens when something breaks? You fix it, right? So what if it is unfixable? How does one cope with it? What does one do then? I was like any other girl in her 20s trying to get through college, hanging out with my friends, and worrying about boys. I was not particularly a stressed person. I was an average student. I never went above and beyond what was needed. I never received awards or scholarships. I did the bare minimum to get through classes and get a degree. In my early 20’s I started having pain in my hands and joints. Living in Midwest, even the slightest cold would make my hands and feet go numb. It felt like needles were pricking at my skin. Therefore, I did what any other person my age would do; I ignored it. I ignored these symptoms for a couple of years and made excuses for it. “Oh it’s just in my imagination. Or maybe weather related. It’s probably just a phase and will go away on its own.” Then one day I woke up with stiffness in my body and joints like never before. I couldn’t even open a jar of jelly. I knew that this wasn’t just a phase that would just go away.
I work as a registered nurse so I’m no stranger to the different diseases and the signs and symptoms related to them. I thought to myself maybe the unknown might be better than the knowing. Finally, I got up the courage to see a my primary care doctor. Immediately, she took my labs and listened to the problems I was having for the last 5 years. I took comfort in knowing that she understood that something just wasn’t normal. Finally, I received my lab results from the doctor. It lit up like a Christmas tree. There were so many abnormal lab results. The doctor tried to explain them to me and went through the list of the possible diseases. With a little positivity and denial, I went home and hoped for the best. I thought, well it could be nothing. I don’t have an actual diagnosis yet. The labs could be just wrong. After further testing, she sent me to a specialist. And at the age 25 I was diagnosed with rheumatoid arthritis (RA). RA is an autoimmune disorder which means the body attacks its own immune system. Unfortunately, there is no treatment that can cure the disease but only management of the disease. RA can cause chronic inflammation of the joints causing sever pain. I felt that my immediate family and close friends deserved to know the situation at hand. As I told them, I could feel their fears for me and looked at me in silence not knowing what to say. I joked around about it to lighten the mood. I acted like it was something that didn’t bother me, because I didn’t want them worrying about me. My rheumatologist put me on two high dose medications that would help ease the pain and help manage the autoimmune disorder. But even they came with their risks and complications.
After a few months of being on these pills and getting labs done monthly, things were moving fast with work and seeing all different doctors. So any distraction from that helped me. One morning, I woke up like any other day to take the pills that my doctor prescribed me. I placed these two white pills in my hand and just stared at them. I thought to myself how day after day I had easily handed numerous amounts of these white pills to my patients at work and walked away. I never even second guessed how my patient was feeling or thinking. But here I am standing on the opposite side of the curtain. I have become the patient holding the white pills in my hand. Is this what the rest of my life will look like? Extending my hand for these pills? Will I become addicted to pain medications? Become disabled? Will I still be able to work as a nurse? Will I ever get married or even be able to bear children? What kind of quality of life will I have? At that moment I completely broke down. I was angry at the world and furious with God. What a cruel joke to throw this at me in the prime of my life. This is a disease I should get when I’m an old lady. My once carefree easy-going life was shattered with one diagnosis.
How have I come to terms with the disease you ask? I haven’t. Sometimes I’m angry at life. Frustrated when I can’t open things or overwhelmed when I am in constant pain. And then I’m reminded I am not the same person I once was and there will be things I won’t be able to do that I once did before. But I know I can’t just stay at home being angry at the world and crying to myself thinking I have become disabled. I HAVE to push forward in life, push harder than others and be able to try new things. Hopefully one day I will come to terms and be able to cope with this disease. Even though, on the outside I look like a healthy 20-something year old woman , I feel like I am trapped inside the body of an old lady. Some days are harder than others and I feel like I am in this battle alone. I do take comfort in knowing that my family and close friends are always there to listen to the problems I am dealing with and am grateful when they provide positive reassuring words when I feel down. I am blessed for the support system around me.
Something I have come across as useful advice when I feel stressed or down is “Practice the pause. When In doubt, pause. When angry, pause. When tired, pause. When stressed, pause. And when you pause, pray.” Everyone has an issue they are struggling with silently whether it be related to work, school, health, family etc. But this advice has been useful for me whenever I feel my life is spinning too fast or I feel overworked. I practice the pause. And I remember to pray. My prayer to God is not to cure me of this disease but to let me understand it better. Help me to cope with it each and every day. Help me to not be stressed or furious with the world. But to make me a better person from it and to become a better understanding nurse. I am learning to appreciate and find the joys in little things, and I’m choosing to move forward with my life but always remembering to take the time to practice the pause. Because the old lady inside of me needs to pause.