There are so many unpredictable things about chronic illnesses. You never know when you’re going to have a good day, or even a day where getting out of bed seems feasible.
Sometimes the idea of talking on the phone is overwhelming enough to induce a panic attack and other times you just ache to hear the ringtone.
There are days where the isolation is maddening but you are overwhelmingly exhausted and unable to socialize.
Other situations out of your control when living with a chronic illness include: the date and time of specialist appointments, the medical test results (bad or good), how friends and family will react to your diagnoses, the side effects of medication, etc.
However, amidst the utter uncertainty that is chronic illness, there are some things that you can control and be accountable for. People rarely want to discuss these situations because being a victim of these illnesses that we did not ask for or deserve seems so easy and natural. But I find it more empowering to be a survivor or warrior than a victim.
I learned at a young age, after being diagnosed with leukemia at 14, that I was to be accountable for my health. This was a hard lesson to hear from an oncologist in my early teens, seeing as how my mom was still making all of my doctor’s appointments for me. As I grew older my mom kept reminding me what Dr. Leaker (yes, that was my oncologist’s name) had told me about taking charge of myself and my illnesses. I decided then that whatever happened to me happened, but I would control what I could.
So I pursued doctor after doctor when I felt pain in my hands. I pursued test after test when I knew something what wrong with my back. I’m not going to lie and say that from diagnosis #1 I fought back and began my self-proclaimed advocacy expert, because I did not. I wallowed. I cried. I became depressed and utterly devastated. But I got back up. I did my own research and learned everything I could about my diagnoses and those of my friends as well. Once you pass the grief of the life you had envisioned, you stand up and own your story. I will not let my illnesses determine the rest of my life. Sure, my future may not pan out as perfectly as I had imagined but that is okay. I am owning my story and I will decide how it ends. I will grab a hold of what I can control and run with it. I will not do things that are bad for my back. I will rest when my body tells me to. I will take my medications as directed. I will see a doctor when I feel that something is wrong. And I will continue to push for the care that I deserve.
I am here for you as well.
Love and Spoons