Six years old is my first memory of chronic pain. Over the years there were different events that unfolded reveling more symptoms and contributing to my pain. Though I was in pain I lived a normal life.
The road to a diagnosis seemed to have no end. Most doctors dismissed my complaints. I had shared with my regular MD that I would bleed when I brushed my teeth, my hands and feet were turning colors, and that I was experiencing joint pain. The doctor ginned at me telling me I was just weird. I continued to have similar encounters with doctors. Many believed I was too young to be in pain, I just had anxiety, I was pregnant, or was trying to get out of school. The frustration did eventually give me anxiety. Getting a doctor to take me seriously was difficult.
My illness kicked things up a notch during my high school years; five surgeries, endless testing, and a desperately search for name for the monster destroying my body. My junior year of high school, I saw an awful doctor who put me on medication that I was too young for. Along with some simple side effects I began to have seizures.
I never expected my medical answers to impact my life greatly. I figured I would get an answer, maybe take a medication, monitor things, and move on with my life. Despite pain and fatigue I was an active adolescent. Many days I was up before the crack of dawn. Like most teenagers I attended high school. In addition I babysat at least five days a week, attended youth group, volunteered at a few day care centers, and volunteered through my church. I adored being busy. My summers were jam packed with adventure with my youth group hiking, swimming, cannoning, summer camp, sleep overs, and mission trips. Fall was just as busy for me with retreats and volunteering.
I didn’t realize how much I would need to adjust or how much my life would change after I got the medical answers I desperately searched for. Summer vacation was like a blank canvass anticipating a stunning work of art. I had committed to going with my church to Kentucky on a mission trip. As things unfolded and Lupus came into the light it became clear that I wouldn’t be able to go. Thick guilt and deep regret filled my heart.
My pastor attempted to ‘include’ me one Sunday before everyone departed for the trip. I was utterly embarrassed, wanting to hide under a rock. After, I slipped away to the bathroom. Locking myself in the familiar stall I sobbed uncontrollably. That is the moment the truth about chronic illness whacked me in the face. I am not going to get better. I am chronically ill. It was a difficult concept for me to wrap my mind around.
I went through months of grieving off and on. I grieved all the things I could no longer do. I grieved the time my illness robed. I grieved the events I missed out on, like prom. That period of grieving was necessary in order for me to move forward.
Grieving can be a difficult part of being diagnosed. However, it is healthy and most times necessary. It is okay to grieve all that your illness has stolen. Be patient with yourself. You need time to learn the ropes of living with a chronic illness. Grieving is only a season in your life, learn from it, it will be over soon.
How do you handle grief from your illness?