My Love/Hate Relationship with Vulnerability and Chronic Illness

“If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” – Brené Brown

The emotional side of chronic illness. This topic makes my skin crawl simply out of habit. For most of my life, I’ve had a rock-solid emotional ‘off’ button. Many of you may even be surprised to know that I actually have feelings. I’m only sort of exaggerating about that. As a matter of fact, I feel quite deeply, so much so that it is often painful. I love so fiercely that it hurts. I can look stone cold stoic while my heart is breaking. If you saw me laugh out loud or, heaven forbid, cry, I was most likely a young child. I remember as a teenager occasionally forgetting myself and letting out a belly laugh and then looking around to make sure not too many people had seen it. How sad is that? I’m really not all that sure where this intense need to be in complete control of my emotions came from. But I think maybe it had to do with my painful shyness. I so desperately wanted to keep the attention away from me. Laughing aloud or crying made me feel weak and out of control and I hated that feeling. I’m not even sure I knew I was doing it, but it became such a habit that eventually I couldn’t express myself emotionally at all unless I wrote it down (ahem… perhaps the reason for this blog?). I never said, “I love you” to anyone unless they said it first. So, so painfully shy. And like Brené Brown says, “We cannot selectively numb emotions. When we numb the painful emotions, we also numb the positive emotions.” So, I numbed them all.

My first experience with grief was when my grandma passed away when I was in 7th grade. I dearly loved Grandma Kate and considered myself to be most like her in my personality and tastes. Everyone knew how close I was to her so after losing her just 13 days after her cancer diagnosis, I knew I was being watched for a meltdown. But my habit of pushing that ‘off’ button stayed strong and not a public tear did I shed. Instead, I cleaned the house with much fervor. As was the habit by now, I couldn’t allow many private tears either, even though my pain was great. Because of this strange emotional coma I had put myself in, I am not sure I properly grieved for her until many years later.

When I was a senior in high school, that ‘C’ word came barreling back into our lives when my mom was diagnosed with breast cancer. And what did I do? I cleaned the house with much fervor. Instead of being grateful to the wonderful food-bearing friends, I was angry. You see, my only experience with anyone bringing us food was when my grandma died. I wanted to shout at these lovely people, “My mom is NOT dead!” But instead, I cleaned. I felt I had to be busy and strong for this incredibly strong woman whose resemblance I bear. My hero. She would come home after chemo and declare, “I got poisoned today”, and go right on cooking dinner for her family. Talk about taking life as it comes. And that is what I thought I was doing. Except I wasn’t taking control of any life circumstances. I was simply tightening that emotional ‘off’ button. We celebrate mom being cancer-free for 14 years now (YEAH!!), but I will never forget that time in our lives.

Fast forward past college and grad school to the first job of my Social Work career. Remember how deeply I feel? Compassion and empathy are wonderful things, except when you don’t know where to put them. I listened to and witnessed terrible things in the lives of broken families. I thought I would be a great therapist because my emotional ‘off’ button was so strong. But I didn’t realize the necessity of being able to release those feelings at some point in some way. All I did was internalize every intense emotion I felt because, of course, I couldn’t scream or cry while leading a therapy session. I also was afraid to let out the intense emotions at home. Sometimes I would go days without talking to my roommate because I thought if I let one tear fall, the dam would break. It takes a very special person to know how to grieve with hurting people while still maintaining a professional distance, and I was not that person. I was a miserable, ticking time-bomb of pent-up emotion. To top everything, during those two years, all three of my surviving grandparents passed away. I felt that since I didn’t cry when my first grandparent passed away, I shouldn’t cry when the others did. I also used work as an excuse to stay busy and not grieve. Even if we took time off, the work still had to get done, just in fewer hours, so I would take the calls that they had passed away and go straight back into whatever meeting I was in at the time. I would take very quick trips to Pennsylvania for the funerals and straight back to work. The one time my ‘off’ button almost failed was when the family was saying our final goodbye after our last grandpa’s funeral. I watched as what I had always perceived as the less emotional side of my family just fall apart. It was almost my undoing. But I mostly held back the tears and headed back to Tennessee.

That’s the day it all went down. I was exactly halfway between my two homes in the middle of nowhere West Virginia when I had my first panic attack. I remember thinking maybe I just needed to eat something so I stopped and tried to stomach a couple chicken nuggets before throwing the rest away. I kept driving but felt like I might have a heart attack or pass out. I remember trying to find the nearest hospital but I couldn’t find it and driving around was making the feeling worse. I was shaking uncontrollably and I truly thought my heart could stop at any moment. I stopped at a gas station and asked the attendant for the address so I could call an ambulance for myself. Riding alone in an ambulance to an unfamiliar hospital where no one I knew was waiting for me is something I never want to experience again. They told me I was having a panic attack and prescribed Xanax, but told me I couldn’t take it and drive. A kind nurse drove me back to my car and my wonderful friends talked to me on the phone as a distraction for the four more hours until I was home. After continuing to numb my emotions with medication, I went back to work the next day.

Later, I tried to describe the feeling of my continued panic attacks in a song called Replenish, that you can listen to here. It always amazes me just how often in my life I have needed the songs God has given me. He always knows best!

"Lord, what is happening to me?
Sometimes I feel I can't even breathe
Shaken to the core til I can shake no more
I close the lid on my heart.

Won't you come and break my seal?
Expose me so that I can heal
Anoint the altar of my shattered dreams
And replenish my supply with you.

The question's always, 'how are you?'
Why can't I tell them the truth?
A simple, 'I'm just fine'
Though I'm dying inside
Tightening the lid on my heart

Won't you come and break my seal?
Expose me so that I can feel
Anoint the altar of my shattered dreams
And replenish my supply with you.

Afraid to overflow, I keep pushing it down
My breath is running out as I start to drown
God, please pour me on the altar of my shattered dreams
Accept these broken pieces as my offering
Please breathe new life into me
And hold me in your arms til I can shake no more
And replenish my supply with you
I am healed by only you."

If you’re interested, you can also listen to the song I wrote as a tribute to my grandparents called Grandma’s Chair and Grandpa’s Song.

Even though, as the song says, I longed for God to break me open so I could let some of these feelings out, I still couldn’t allow him to do so. I was too afraid. I continued with the emotion-numbing medication throughout the rest of that job. I never spoke openly about my emotions bottled up from that job and my grandparents, or really any other emotion in my life….

Until I met Jason. Something about this man made me feel free to open the vault of my heart. He was so understanding, allowing me to cry in his arms. I suddenly wanted to share the depths of my soul with someone, the good and the bad! I was so grateful to finally have a bit of an outlet, but I was still hiding from everyone else. It’s a die-hard habit.

And then my illness hit. My doctor told me this week that many autoimmune diseases are triggered by some type of trauma. He says the body tries to fight off your emotional stress but there’s nothing to fight off so it attacks itself. I’m not saying that to be true for everyone, but for me, the timing is exactly right.

Life after those two stressful years was awesome. I had a job that I loved, I was living in my favorite town, and I met and married my amazing husband. But I was still stuffing my emotions with the sheer force of my will. Until my physical self broke. Once the thing you can still use to hide your emotions wears out, the ‘off’ button doesn’t work quite so well anymore. I’ve spent so much energy fighting my physical body that I no longer have enough energy to fight off the emotions.

Christmas of last year is when the dam broke. If you’ve ever seen the third Hunger Games movie, I felt just like that scene where they light explosives, the dam crumbles, and the water spews out with enough force to drown or severely maim those in its path. We tried to travel to Pennsylvania to spend Christmas with my family. I haven’t been well enough to go there in ages. I don’t know what I was thinking. Of course I couldn’t do it, but we tried anyway. That’s when we found out that not only was I very sick, but our dog gets carsick. We got an hour away and had to come back. Since we planned to be gone, we didn’t have any food in the house. I knew I had to go get groceries before completely falling apart so I tried to immediately go back out the door. I didn’t realize that our dog had been so traumatized by the day’s events that she tried to follow me out and I almost shut her in the door when she yelped in pain. I knew I hadn’t really hurt her badly, but that was the last straw. Something inside me snapped, shattered, collapsed, burst. I fell on the floor next to her wailing that I was so sorry, and then I moved from that to yelling that I hated myself and my body. I was so tired of being sick and couldn’t take it anymore. I screamed at the top of my lungs that I wanted to die and I hated God for doing this to me. I recoil at this picture of myself and I’m still shaking as I type this. Who knows if I’ll have the guts to actually publish this. I tried to get to the bedroom so my husband wouldn’t see me like that but both he and the dog followed me, mostly so she could hide in her crate while momma had a complete meltdown. I sobbed and wailed and yelled at God so much my throat hurt and I thought I might pass out. Jason was amazing. I thought perhaps a trip to the psych hospital or concern for the neighbors crossed his mind, but he just held me and prayed over me. Eventually my dog came out of hiding and licked my tears.

My emotional ‘off’ button hasn’t quite been the same since then. Years of habit and fear of vulnerability still cause me to try and hold back the feelings, but I’m too tired. And now I have a love/hate relationship with vulnerability. I have discovered the wonderful gifts that come with sharing the deepest corners of my heart with people. I deeply love. It’s impossible to tell someone you love them without being vulnerable. And vulnerability leads to an even deeper mutual love. Illness has forced the protective shell around my heart to shatter and it feels better each day. It’s incredibly scary and I hate it but I love it. The old me still tries to rebuild the protective walls while the new me and God work to tear them down. The namesake of this blog, “Beautiful Rubble”, comes from a song God gave me called, “Brick by Brick“.

"Brick by brick, I was building up my cold, hard walls
Brick by brick, you chipped away and watched them fall
I once stood in the beautiful rubble 
Of my own cold and heartless walls
Too afraid to leave them that way 
Too afraid of the pain it might cause
So brick by brick, I lay them as you tear down.

Bruised and battered, my heart once shattered 
As tears flowed from another's eyes
Through visions of this aching world, wept until the tears ran dry
Longing for comfort, I cling to the lie that pain can't touch a calloused heart
The mortar of my jaded emotions filled up the cracks of my stone.

Brick by brick, I'm building up my cold, hard walls
Brick by brick, you chip away and watch them fall
I once stood in the beautiful rubble 
Of my own cold and heartless walls
Too afraid to leave them that way
Too afraid of the pain it might cause
So brick by brick, I lay them as you tear down.

This unfeeling stone has been here too long
I'm not even sure I can feel anymore
Numb from the pain I see all around
I wonder how long til the bricks tumble down
Break my heart once again for the pain that breaks yours
Replace the cold stone with your living warmth
Use the hammer that nailed you to that tree
Til my heart is alive once again.

Brick by brick, I was building up my cold, hard walls
Brick by brick, you chipped away and watched them fall
Now I'm standing here in the beautiful rubble of my own cold and heartless walls
I want to see with your selfless eyes and feel with your tender heart
So brick by brick, I lay them at your feet
Pierce my heart with the nails that caused you such pain
I lay it at your feet
I lay the bricks and my heart at your feet."

Tears still spring to my eyes when I think of the awful things I said to God but he already knew my feelings and he knows how deeply sorry I am. Even when I was beating up on him on the floor of our bedroom, he was holding me and loving me. I am relieved and overjoyed to stop hiding from him and others. I want people to know how I feel about them. I love hugs and saying, “I love you”, but I’ve always been too afraid to initiate them. How sad! The people that I love so fiercely need to know! I am slowly learning to let my emotions come out. It’s not easy. It’s terrifying and sometimes still makes me feel weak. But when I am weak, then I am strong (2 Corinthians 12:10). Another great quote from Brené Brown, “Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.” Vulnerability is just another gift my illness is giving me. Thanks be to God.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy – the experiences that make us most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” – Brené Brown

I lay the bricks and my heart at Your feet. Amen.


Feel free to join me in the encouragement group, Beauty in the Rubble. I'd love to get to know your story!
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Author: Karina Baker

Hello, my dear friends! Glad to see you here. Thank you for reading about my beautiful rubble - my struggles with life, faith, and autoimmunity. Feel free to share your stories in the comments. My love and prayers to all of you!

7 thoughts on “My Love/Hate Relationship with Vulnerability and Chronic Illness”

  1. Sadly I guess you get some of this from me. I had a roommate who once told me I had built a wall so strong and high she wasn’t sure if it would ever come down.

    1. Who knows why we do what we do. I love our strength, but I guess I am learning to be weak too and that learning this, in itself, is a strength. You tried to get me to open up when grandma died. I remember. But I just flat out refused to deal. Now I’m living and learning. Love you!

  2. I wish I could express how much I can relate to your story but my walls are to thick and high. You are definitely blessed with the ability to express and touch people Karina. Keep your walls down and let life happen. God is using you through your honesty in your writing and your songs. Let Him be the potter and you the clay. Keep expressing your feelings and keep those walls torn down. Hugs

    1. I’m doing my best not to go back into hiding! I really want to but then again I don’t! It’s so hard! But there’s no wall too strong for the power of our God! Love and hugs back to you. Thank you for reading and commenting. Those who can relate are the reason I do this.

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