This episode I share a story from my own history with shame. It’s interesting though, that as I delve into this topic, it’s been prevalent in my life in new ways, so although I’m talking about chronic illness, shame has a way of creeping back in, just when you thought it was a goner.
We also talk about the root of shame: that we are really just afraid of not being connected, of being rejected, and of being alone.
Additionally, I’ve put together a little exercise for all of you. I think your pain needs to be validated and shame can make us push what we truly feel and what needs to be dealt with in order to heal, to the recesses of our psyche, making it virtually impossible to ever really come to any sort of acceptance.
So listen to this one, and get some paper, and do the exercise, because you matter. Your feelings matter. Find people who are worth connecting with and share the pain that is going to help shape you into a more complete being.
Well, friends, this was a bit of a “special” episode. Brit Winsett of Celery and the City came over to talk about being a woman with chronic illness and how shame weaves its way into all of this. So, we popped open the wine (for me), brewed the tea (for her), and opened the gluten free cauliflower crackers (for us both).
Our conversation takes some serious detours (vomit stories included), but you’re going to hear about why we think it’s so hard to continue to like your body when you have been diagnosed with an illness, how it takes a toll on your femininity, how shame makes you think differently about yourself, why we feel ashamed when we haven’t done anything, and we talk about sexuality and sex after chronic illness (despite Brit’s attempts to distract from sex talk by referencing my dog).
Whitney Goodman’s (@sitwithwhit) post on positivity:
Detour Media Were You Inclined:
1 – Tank covered in kid puke
2 – ASMR
Brit brings us into the topic of ASMR with her cracker chewing. I thought the whole topic was ridiculous, until I started listening to it. It’s freaky calming. Ok, and it’s weird, but don’t knock it until you watch/listen. Here’s a sample for my fellow freaks!
-*Crinkle Crinkle lil shirt...*- ASMR/binaural/hair brushing/whisper - YouTube
3 – Inspector Gadget
For the Millennials who didn’t get the reference: welcome to every child of the 80’s after school binge.
Inspector Gadget: Monster Lake // Series 1, Episode 1 - YouTube
I’m learning recently how chronic illness taught me to compartmentalize myself. Marie Kondo would be proud of the multitudes of boxes I created for the various facets of self, but, as I reflect, it’s probably best to keep the organizing confined to the physical objects overtaking our homes.
However, Interstitial Cystitis took me over. It became me. It was messy and the pain was distracting, and I needed to go through some shit and find the me I had forgotten about in the back of the closet.
I picked my disease up and I placed it, along with all the physical sensations of body into the “body box”. Nice and tidy. All picked up.
I put my spirituality into the spirituality box, my personality into the personality box, sexuality into sexuality box, emotionality into emotions box, and on and on we went. Dust collected and settled on the body box as I dove into all I was aside from the pain.
This was absolutely what I needed to do in order to heal. I needed to understand that my body’s pain was not all I was, but as I did this, I forgot about all the incredible, beautiful, aspects of having. a. body.
Body became public enemy number one. She had betrayed me. I did not trust her. She snarled and growled and took my joy away. How could I ever possibly love her the way everyone says you should love a friend? I couldn’t. Because she was no longer a friend.
Another truth which would be easy to leave out, but I just won’t anymore, is that there was trauma trapped in my body and I was afraid of it. I knew acknowledging my body again would mean acknowledging this trauma, and I knew it was going to hurt. Friend, I really didn’t want to hurt anymore. I’d done enough hurting, hadn’t I? Maybe you feel the same way?
For whatever reason, we believe that we deserve respite from pain. We think we have had our fill and so now it’s time for all the accumulated good we have been deprived of to come strolling in like Prince Ali and his “spectacular coterie”. Like life is fair or something.
So, I closed the lid on my body box and I moved over to the boxes marked: mind and soul. It was a gorgeous melody full of reclaiming my creativity, understanding my connection to the divine, and finding a place not a single person had the ability to hurt me in anymore.
I was thrilled when my body started healing as a result, but I still wasn’t ready to come back into my own skin. I liked the idea of hovering outside of it, and I did. For a very long time. It was complete self awareness in one sense but complete denial in another.
Coming back into my body meant acknowledging this trauma, making some seriously difficult life changes, and understanding I was now in a 36 year-old-mom bod. The last time I had truly lived in my body, I was probably 18.
Waking up in a much older, much more mature body was slightly shocking. I was surprised, because I thought I had accepted my appearance. And, I had accepted the too much and the too little, the too big and the too small. I had. However, I think there is a deeper level to body acceptance and it has nothing to do with what people can see, but everything to do with what you can feel.
I had kept quieting it. It whispered stories I didn’t want to hear. So, I kept suppressing the dance it wanted to sway, and step and sweat.
Finally, after years of this, I understood the shame of illness was there, along with other truths I am currently dealing with.
Trauma’s a bitch. She needs to be released, but she screams like a banshee on her way out, ripping you apart as the dull ache in your chest suddenly becomes an epicenter of raw, stinging, acidic, emotion. And it isn’t quick. I’m still feeling its exodus and the toll it is taking on me isn’t small.
But I’m also learning my body doesn’t exist solely to bring me physical pain or hold emotional pain, which was the lesson I had learned until I adjusted this thinking. It’s here for something beautiful too.
It’s here to bring me here. Every thought is a result of breath coming into my lungs, and blood rushing into and out of my heart.
Beyond allowing us to actually be this strange meaty beings, our bodies exist for much more.
As red as this is going to make some of your sweet faces, we’ve got to get back to pleasure.
I mean that sexually, yeah. I do. Because sex is good, but I also mean that in a completely asexual way as well. I mean we have to pay attention to the ways our bodies make us feel good, just as much as the way they make us feel bad. Actually, we need to pay attention to the good exponentially more than the way they make us feel bad.
If you’re not sure how. Start with this:
Feel that breeze brushing past the nape of your neck and let it tingle down your spine. Let it feel good. Thank your body for that.
Feel the way your legs feel, bare against the crisp sheets as you crawl into bed. Thank your body for that.
Feel the way the heat of your coffee moves slowly down your throat and into your stomach. Or the way your baby’s cheeks feel like warm marshmallows against your skin when they wake up from a nap. Or the way water skims and swirls around you as you swim. Or the way the pressure and warmth of your partner’s kiss helps you better understand “home” and “safe”.
Thank your body for alllllllll of that.
Our bodies are not our enemies, friends. They house pain. They reveal pain. But they also house delight and joy. They are our conduits to all sensation.
Don’t fight the pleasure of being alive because you stowed your body away with your disease.
It’s not your enemy.
It’s your friend, and I want to help you step back into it. Pour out all the compartments of self back into a messy pile in the middle of your living room and jump into them like a pile of warm laundry. And then, feel it and thank your body for that.
On today’s episode, George Evans, personal trainer and online coach, gives us an inside look on growing up with Cystic Fibrosis. He discusses how much physical activity and eating well has helped him and how his desire to share this with others brought him into his new career.
Additionally, he shares why he believes men have a harder time discussing chronic illness than women, why we need to start ditching the victimhood mentality, and discusses a vulnerable time in is his life when he lost the majority of his intestines in the ICU.
Many are not aware that those who have Cystic Fibrosis cannot meet one another in person. (I wasn’t until I conducted this interview). We talk about this, the new movie, Five Feet Apart, which is a love story on this very idea, and how this played a major role in George’s decision to start coaching online. He can now help other “CFer’s” on their physical journeys in a personal way, without the risk of cross infection.
You can find George on Instagram at: @g18evans
To donate to the Cystic Fibrosis Foundation, click this link.
I’ve been trying to decide exactly what this post would be: a well researched discourse on shame in the chronic illness community? A discussion on the differences of gender and stigma within illness and coping? A discussion of damaging dogma on our sense of self? Maybe all of the above will trickle in — but I think the crux of all of it is: I am good and so are you.
I recently listened to a podcast with the incredible Elizabeth Gilbert who said this: “You are good. You are sooooo good.”
She repeated and repeated and each time she said it, I felt another tear fall, and then another. I had twenty minutes until I needed to pick my son up from school, so I drove around, windows down, in thirty degree weather, blasting music, and repeating to myself “I am good – I am so good”.
I grew up with parents who always let me know how much they valued me. I did not, however, grow up in a church, or a school which communicated the same belief. In fact, were some of them to read this blog post, I can only imagine the fodder it will give for the next Bible study.
I grew up believing I was bad. The only way to rid this bad was Jesus. As an overthinker, the continual process of “I want that” which followed with “but it’s bad – I’m bad” which followed with “Jesus forgive me” became almost sicker than my illness.
Lately, with new issues, it’s been the same thing. Until I listened to that podcast and let her words sink into my soul (and body), I believed anything I wanted was probably, inherently bad. It’s what kept me in toxicity for a very long time:
Do not trust yourself. You are bad. You are not to be trusted. Listen to everyone else, but not yourself.
And recently, in a conversation with friends, I said, “what makes them right and not you?” Funny how the things we say to our friends are sometimes meant for ourselves.
As I have the tendency to get lost in my head, I have found, in all the thinking, and thinking some more that I have neglected my body. Before you get all, “Callie, your body is fine”, I’m not talking about the body you see. I’m talking about the body I feel.
First of all, shame has taught me to ignore it, because of the many things I was taught. Body is fleshly and evil and we pretend we are never naked (never nudes for my fellow Arrested Development fans), and we close our eyes when we walk past the mirror as we get out of the shower, and please, let the boys stay pure and keep that bra strap covered!
So many well intentioned rules (and some are ill intentioned and just fear mongering and disgusting) have destroyed too many women, and men, for that matter, and now I’m seeing it in the context of illness as well.
When I got sick I blamed my body: my bad, evil, fleshly body. How dare it do this to me? I found ways to reconnect with myself, under the pain and, quite frankly, separate from my body.
My soul felt safe, so I poured into it, and, while this was certainly not time wasted, because in all of that I found a part of myself that pain holds no bearing, I also forgot about other aspects of self that I am only coming back to now.
Only now, as I heal in new ways, am I finding I can no longer ignore my body. I’m learning to listen to it, to let myself drift out of my head and into those blood pumping, air breathing, light sensing parts of myself.
I’m also learning it has housed trauma I thought I had dealt with. I find it in pockets in my chest, when I feel I can’t make one more decision or take one more step forward: like there is this wall in front of me that I have to continually break through. In all the work I am currently doing on emotional trauma, related to my illness and to other issues in my life, I am hearing the same thing: listen to your body.
But how does one do that? (Says the thinker.) Is this even a thing? All of you body types are nodding your heads yes, because you’ve known this forever. Your body alerts you before your brain has a chance to even formulate a thought, but for some of us, our bodies are just thawing out from being cryogenically frozen.
Speaking of freezing, did you know trauma causes this? This is something else which is coming up in every book I am reading, and when you start reading the same thing from separate, unrelated sources, you realize it’s something you are supposed to pay attention to.
When we face trauma, we go into fight or flight mode (see my interview with Whitney Goodman where she explains this particularly well, as well as the next part I am about to mention).
Some of us, however, freeze. I shared with Whitney that this is commonly how I react to something more than I can handle. I just stare and feel my stomach drop and suddenly the girl who can’t ever shut up (hello blog and podcast) can no longer formulate a word.
When we’re fighting an illness, we sometimes do this: we freeze and eventually, we can actually dissociate from our bodies. What is this thing with long appendages, that heaves up and down and gets hungry and thirsty and needs to lie down?
I think in all our efforts to remove and forget the pain, we also remove our connection to all we were meant to enjoy about our bodies as well.
So, I am making an effort to slip back into my body and let it do some talking. I’m going to spend some time on the blog and on the podcast via interviews and solo shows these next couple of weeks to talk about what illness does to our sense of selves and how we think about our bodies.
I’m also simultaneously doing some work (it sounds insane, so I’m waiting to tell you about it) the next couple of weeks to reestablish a relationship with my body. I will report back on my findings soon.
Until then, I am leaning into the idea of “I am good” – this isn’t limited to the me under the flesh. This IS my flesh. It is good too, despite what I was brought up to believe, and yours is too.
What about you? How has shame over illness shaped your relationship with your body? How do you continue to love a body which is sick or was sick? Tell me in the comments below.
In this episode, I interview Whitney Goodman, LMFT, owner of Collaborative Counseling Center in Miami, Florida. Whitney conducts individual and couples therapy for Florida residents, and works often with those of us with chronic illness.
We discuss how the mind and body impact one another, and how chronic illnesses can have a neurological component.
Whitney answers how we can break out of the trauma cycle, why “healed” doesn’t exist, and debunks everything you probably thought you knew about self-care.