Replacing Guilt with Grace with Chiari Malformation 

I am a naturally guilty person. Feeling guilt over situations is my first reflex. I feel very easily like things are my fault, and that I should have done better, tried harder, somehow foreseen whatever situation I made a mistake in. 

This is only compounded–or maybe caused–by my lifelong chronic illnesses, both physical and mental. I logically know none of them are my fault; this is how I am wired, how I was born or developed or whatever. But the guilt still flares up more every time I go into a flare. When I have a horrible Chiari headache and still go into work but am not my normal peppy, bouncey self, my first reflex is to apologize. I apologize not just for what I do, but for who I am. Guilt makes me feel like a mistake, like I am fully defined by my illnesses and good for nothing else. 

My last post was about control; what I can control, and what I can’t. My illnesses, as I wrote, are something I can’t control: but what I can work on controlling is my reactions to my illnesses. I can work on moving from a place of guilt to a place of grace. 

Grace for myself is probably the hardest grace I have ever experienced. When I make decisions, especially decisions around my illness, I feel intensely guilty. Recently, I had to make one of my hardest decisions yet: leaving a job I loved for another, my health and need for health insurance being the reason. My first reaction was so, so much guilt. 

Then, all the stress from that decision sent me into a series of flares, and temporary illnesses–a bad cold and a bad stomach flu–and a Chiari flare on top. That meant that over the weekend, I was pretty much good for nothing, and my wonderful husband and in-laws took over a lot for me so I could rest. I am not going to lie: guilt was my first reaction there, too. But since in 2017 my goal is wellness, I decided to take a deep breath, accept the help, and consciously focus on giving myself grace. I have to let myself be ill, because I can’t control it, and not feel guilty about it. 

There’s a powerful Christian song by Matthew West called “Grace Wins” that really helps me in my guiltiest moments. I actually have switched to listening to a lot of inspirational music this year and I have actually found that it has helped me tremendously in my chronic illness journey to wellness. I am going to write a post shortly about Christian songs that help me through my Chiari battle, if that’s your belief system and that helps you too (if that isn’t, that’s perfectly fine! You can still have grace with yourself and not be guilty about your chronic illnesses.) 

Here is a section of the lyrics:

There’s a war between guilt and grace, And they’re fighting for a sacred space But I’m living proof Grace wins every time

No more lying down in death’s defeat, Now I’m rising up in victory, Singing, hallelujah, Grace wins every time. 

This song helps me see my life as precious and sacred and important to God. I only have one life, and I could let it be ruled by guilt. It would be easy for me to let every single one of my decisions be motivated by feeling like in not enough, that I have to prove myself to people, that I can’t show others my cracks and flaws, that illness is weakness. It helps my grace define me, not my guilt, because I remember grace is stronger, and I am stronger. I can rise up after a bad day. My bad days do not define me. Grace defines me. I can give myself grace, remember to be strong, and triumph the next day. 

But moving from guilt to grace is not easy. It’s one of the hardest things I do. It involves a complete mental shift, where I acknowledge the guilt and remind myself–sometimes out loud–that, even if it is a mistake I made, I am already forgiven by God for it. And if it is illness related, then it’s not even something I need to ask for forgiveness for, because it’s not my fault! I don’t need to feel guilty about my illnesses, because there’s nothing guilt can do. 

How does grace look in practice? To me, it means making choices that sometimes mean putting my health first, even if for some reason I feel like there’s an unconcious “should” that makes me feel guilty. I have a great therapist who gave me a great challenge to get rid of unconcious “shoulds” in my mental vocabulary. I have a lot of them, and they all lead to guilt.

 For instance, I “should” work all day, instead of taking a split shift job where I come back and nap and take care of myself, then go back in. I. “shouldn’t” nap, because I am 25 and should be a healthy career woman. I “shouldn’t” let my husband watch our daughter for a bit so I can take a break, because moms shouldn’t be chronically ill. 

These “shoulds” are all ridiculous, and they don’t live in reality. I am the way I am, and I firmly believe that I need to have grace and love myself, exactly as I am, illnesses and all. And to do that, I need to have grace with myself. I need to do things to build my self-esteem. I need to have honest conversations with people in my support system, people who love me unconditionally, about what my health struggles are and how they truly affect my everyday life. I need to have honest conversations with my doctors and take medications that help me, instead of feeling like I “should” be able to power through my conditions without medication. 

I need to look in the mirror, and have grace and love for what I see. This body isn’t perfect. She is often sick. But she is mine, the body God gave me, and all people are made in God’s image. Even the chronically ill; even me. 

This is also important because guilt makes me sicker. It builds up inside of me and becomes stress, and pushing, pushing, pushing because I am motivated by guilt, not grace, often causes me to totally neglect true self-care, have a meltdown, and end up in a long flare. Guilt is a counterproductive emotion.  

I am human. I make mistakes, big and small. I am chronically ill, and sometimes I am not able to do what I would like to do, and sometimes must let things go so that I can keep being a healthy, whole person. And the key to this is grace: grace with myself. I forgive myself, I accept myself, and I love myself, chronic illness and all. 


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