“At Least it’s not cancer”
Gratitude in Body Grief and Stupid Shit People Say
“At Least it’s not cancer”
“No shit sherlock”, I say in my head as I roll away in my wheelchair doing my best to smile, “nod” my fused neck and save the sass for when I’m alone with my husband. Smile and save the fucking sass, it’s just easier that way sometimes. I’ll tell my mom I feel like Princess Ariel when she gave her voice Ursula the Sea Witch, we will both giggle to lighten our spirits, but deep down I know that it hurts, I’m joking about deep Body Grief.
I hear it on repeat in my head…
“At Least it’s not cancer…” as I reach for my pill minder and swallow a handful of horse sized pills that literally keep me alive. My husband and I know that three of those eight are “no miss day” pills, to keep me alive functioning, and out of debilitating pain, I take a sip of water hardly wincing as the pills scratch my throat. But “at least it’s not cancer,” I pop my loosey goosey hypermobile joints back into place, unlock my wheelchair, and go on with my morning.” I am grateful.
“At Least it’s not cancer…” As I lay flat on the stretcher being wheeled into the MRI room for a scan of my brain to see if the fluid pressing on my brain stem has decreased, the tech asks about any recent surgeries. I take a deep breath and walk her through my history. She finishes her doodles, “Wow, you are so young for such a long history!” I exhale, and dissociate, “Yep, it’s not my first rodeo!” I’m used to this conversation by now, it’s like muscle memory. I am surrounded by so many doctors, machines, and in probably the safest place on earth for me, and yet I feel lonelier than ever. But, hey…at least it’s not cancer. I smile and continue with my scan. I am grateful.
“At least it’s not cancer…” as my husband and I redefine what adulthood and marriage means to us. I look down at my laparoscopic scars, one, two three, I count…they don’t seem so laparoscopic when I am trying to feel sexy at 32. I am grieving my body. We are grieving parenthood and facing an unknown future as our friends do the complete opposite. And yet I’m out of so much misery without my uterus and we’ve gotten through 19 surgeries over five years, we will get through this too! And for fucks sake…at least it’s not cancer. We are grateful.
“At least it’s not cancer…” as I get to know a specific and unique type of loneliness that I never expected or welcomed into my life. I speak to my friends with chronic illness, and it is as if they can relate on a cellular level. Choosing to wake up every single day despite the pain, either physical or mental, knowing the strength it takes to open our medicine, and do the self care things that make us feel that much better, it is hard fucking work, and important. Body Grief is watching life keep moving while your body won’t let you participate, missed connections, lost time, because of pain, because of illness that has no cure and in my case and in many cases hardly any treatment. It’s lonely, it’s painful, it’s exhausting. It’s hopeless. It’s grief.
But. “At least it’s not cancer.”
I always had gratitude, and I always will. But the gratitude is for the pockets of joy, for the now, for the things and moments that I HAVE not for what I don’t.
I am grateful for abundance, the present, the moment, for the minimal, for “yes!”, or “I love you!” and“I hear you,” or “You aren’t alone,” and “that sounds hard AND”… never for “at least.”
I am grateful for the sun beam on our black cat, Lilly’s, floofy belly while I sip my perfectly muddy french pressed coffee, and breathe in the thick muggy Charleston air in the mornings on our magical back porch.
I am grateful because of the Taylor Swift Movie and Album that are coming out in October, and every Taylor swift announcement to be offered therein after!
I am grateful for the stroll that my Husband, Sean, and I went on this morning, before the tar got too hot for the dog’s paw pads.
I am grateful for these small moments of joy.
AND I feel Body Grief, a lot of it.
Maybe sometimes I’ll slip into self sadness and self pity, I am human. But I was and never will find peace or calm from knowing “I don’t have cancer,” because for fucks sake that may be the most ridiculous statement there ever was!
This phrase is saturated in ableism, one, because it compares illnesses and forces us to create a hierarchy of suffering, wellness and health. Two, because it is assuming that someone has not gone down the route of being diagnosed with a terminal illness. Three, because it is disregarding the impact that illness, pain and mental health has on a person’s overall health and Body Grief. Four this opens the conversation to the “medical olympics” and takes humanity out of the equation. Five it places value on health and therefore makes the conversation elitist and boring. Six, this just isn’t a helpful statement to anyone, at all.
So let’s talk Intention…
Intention vs. impact is always important, but let’s just ask this...what was the intention here…most likely to help make the person who is sick feel grateful? Those of us living with Body Grief live alongside gratitude every single day, that is an active choice. After years of studying Body Grief, and interviewing case studies for my upcoming book, This is Body Grief, I can say with my expert opinion, that words like “atleast” and statements like “at least it’s not cancer” or “it could always be worse” are incredibly minimizing to someone’s experience. Yes, these things are true, and can be healing for the person on their own, but incredibly unhelpful when coming from an external point of view, as it is not empathetic and can bring about a lot of shame. Shame does not foster a place for compassion or healing. So no matter the intention, the impact is unhelpful, and potentially harmful or hurtful.
We all have Body Grief, we all have pain, we all say stupid shit because we are human and have the urge to fix…so let’s work tapping into our Body Grief and doing our best to listen and find empathy and compassion rather than compare and fix.
Now What?
What can you say/do instead?
Seeing that we all live with Body Grief, I think it is so important to have some phrases and tools in our back pocket, because sometimes even with the best of intentions the impact is unhelpful or harmful. Remember sometimes we just need an empathetic ear.
“This sounds so painful for you, thank you for sharing this with me.”
“I am here for you”
“How can I help today?”
“Is this a hug or help type of situation?”
“Here are the ways in which I can help you.”
“I love you.”
“I am available these times this week.”
“I love every version of you.”
You’re not alone although I know it can feel that way. I’ve been living with chronic pain, fatigue and life long spontaneous joint dislocations from Ehlers Danlos Syndrome hypermobile type. My geneticist said that to me “it’s not cancer...” so no one is spending any money on finding answers even though it can kill you. So I’m now at the end of my 66 years on the planet because defective collagen has evolved into spontaneous kidney failure. I’ve been left behind by family and friends who don’t understand chronic illness because “you look great” People think they’re helping by saying that but they don’t realize they are invalidating everything your going through, especially the never ending intractable pain no one can see.
Anyway, my thoughts are with you and thank you for sharing your story with us. 🙏🏻
I've sometimes found myself thinking that if I had cancer, at least I would actually know what it was, and treatment options more clear. Having a chronic illness that no one seems to be able to pinpoint and therefore know exactly how to treat is terrifying in its own way. Comparison is never the answer.