What It Takes to Combat Shame Surrounding Chronic Illness

I read the following quote by Brene Brown in an article about shame and chronic illness. I have been thinking about it quite a bit since reading it. I like Brene Brown. She has a lot of great stuff to say about embracing vulnerability and dealing with shame, but something about this quote has been bothering me.

“Shame derives its power from being unspeakable… If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither.” – Brene Brown

Yes, shame and secrecy are certainly bedfellows. Yes, speaking up and out versus keeping everything inside will help to combat shame. But in my experience, words are not enough. I don’t agree that naming it and speaking it will cut it off at the knees. Shame is a lot tougher than that. Shame is like a virus that is always finding ways around new defenses.

I speak about having muscular dystrophy openly and with relative ease compared to how I was growing up, when I never spoke about it or told anyone I knew. I have a site about chronic illness. It is one of my main areas of specialization in my therapy private practice. I write about it and give talks and help others deal with their chronic health conditions. All that hasn’t been enough to cut the shame off at the knees.

In fact, if I let my punitive voice run wild and free, I could allow it to convince me there is something wrong with me for still feeling so much shame. But I know better. I know shame is a beast with many heads. I know that words and speaking about muscular dystrophy and my experiences living with a chronic illness help to not feed one of the heads of the beast, but I also know shame is a hungry, hungry beast.

It’s easier to hide. I often have to push myself to participate in things that involve people and unfamiliar places. It’s not just about being an introvert, either. It’s about confronting people that don’t know my story. It’s about navigating foreign terrain and all the energy it takes to not trip and fall. It’s just easier to stay at home in my cocoon where it’s safe and where I am immune to cracks in the sidewalk or sideways glances.

In many ways, I feel like it is easier for my family too, because it means they don’t have to worry about me falling. It means my son doesn’t have to deal with his shame about having a dad with a disability. These are compelling reasons to just stay home. But I also know this is feeding the beast and it takes more than just words to combat the shame. It takes actions.

If I stay home all the time, what kind of message am I sending to my son? I was talking on the phone with my uncle the other day and I told him I think dealing with shame is probably the worst part of having a chronic illness, worse than all of the physical limitations. That’s not hyperbole. I really believe shame is that toxic.