Today I cried with my physical therapist. Today, I can’t make any more medical decisions. Today, I want a body that just works. Today, is a positivity free zone.
I constantly look for reasons and causation in my health. I’ve done so for ages. What is causing me to throw up uncontrollably all through my 20’s? (Gluten) Why do I have a stabbing eye pain in my left eye? (Optic Neuritis) Why am I losing function at a rapid rate despite stable MRIs? (Neurodegeneration) But the truth is with MS, and most if not all chronic illness, is that we don’t know. There is no neat equation that explains our disease progression. X% genetics + Y% environment = Z disease. It just doesn’t exist. There is no magic pill or supplement. There is modern medicine + supportive care + complimentary medicine and there is hope. Oh yeah, and there is constantly trying ONE MORE THING to see if maybe you’ll feel better. But it’s exhausting – mentally, physically and emotionally.
The ongoing quest to master the equation is what science and doctors are doing. It’s their chosen profession. However the unwilling participants — those of us with chronic illness — have the same work load with no compensation. Today, I’m tired. I’m emotionally void. I can’t fight insurance. I can’t ask my medical team to advocate on my behalf. I’m mentally done. I have decision fatigue. I’m physically struggling. So, I decided that I am taking the day off from chronic illness. I am taking the day off from believing everything will work out. My positivity is on PTO.
Toxic positivity wasn’t a phrase in my vocabulary two years ago, but it is now. We aren’t supposed to be happy all the time, always productive. There is a place for darkness and sadness and despair. Feel the feelings. Live in the crap. It’s ok to be sad. And I don’t have to just be better since I willed it to be so, because today I’m not.
A dear friend of mine recently said, “Damn Carolyn you are so strong, but I wish you didn’t have to be.” Few things have made me cry so hard. It was like a sucker-punch to my solar plexus. I am strong, I’ve endured a few low blows and difficult life events recently, but today, I just can’t. I can’t be strong.
Even in typing this I find myself censoring to not whine, not complain, look to the positives. There are many things going for me but the truth is today is ruled by sadness and overwhelm and that’s ok too. I’m giving myself permission to put off my to do list, ask others to help and just be where I’m at.
I deliberately share this struggle, this Alanis Morisette-esque journal entry ballad, for anyone going through anything (aka EVERYONE!) so they know it’s ok to just say, “this sucks.” And for those reading this, I don’t need to hear that the sun will come out tomorrow, or that it will all work out, or that God has a plan, or look how far I’ve come. I need you to acknowledge that this sucks. I need you to sit with me, by my side. You don’t have to say anything at all, just be ok with dark days too.