This post contains affiliate links, for which I may make a modest commission through purchases at no extra cost to you. Originally published in 2017, this post was updated and republished on 6/1/20. Thank you.
There’s an understanding in our society, both spoken and unspoken that places the worth of an individual on what they can accomplish. When your health deteriorates to the point that you can no longer hold a job or take care of your kids and your home as you would like, you may find that you’ve internalized that belief to your very core. You quickly begin to wonder what value you have left if you can’t continue to lead the productive life you’ve always had. This can lead to toxic shame, especially for those were taught at a young age to shoulder the shame of others.
In many ways, this is doubled for spoonies who spend years going to doctors who do not believe them, misdiagnose them, and spend years searching for answers about their mysterious symptoms and conditions. It can take an average of ten years to get a proper diagnosis. Some patients are outright accused of faking, are shipped off to psychiatrists in the false belief that their problems are psychological. It’s easy to lose the faith of friends and family who do not believe that your illness, or the extent of your illness, is real.
My Struggle with Toxic Shame
All of these things were true for me for over 15 years and I was filled with guilt and anger with myself over circumstances I couldn’t control. I felt like a complete failure and believed that everyone around me thought I was a failure and a lazy good-for-nothing fake. I became intensely angry every time I had to ask for help, felt I wasn’t being understood, or someone asked to do something that was obviously too much for my current ability levels
I became enraged every time I felt embarrassed by my cognitive decline and memory loss. I was mortified by the fact that I couldn’t write anymore, that my brain simply didn’t work that way. Every conversation about writing ended with people telling me if I wanted it bad enough, I could. They didn’t understand. Eventually, I became intensely angry about everything.
I became so shame-bound about my illness that I began pursuing a diagnosis not to get help, but to prove to everyone just how sick I really was.
I knew logically that it wasn’t my fault, but I couldn’t escape the feeling that I was doing something wrong and that I should be terribly ashamed of my circumstances: Because anger was a much easier emotion for me to deal with, in any situation that invoked shame, I quickly replaced that shame with anger. I also utilized my anger as a way to push people away. That way I didn’t have to deal with them or my feelings of shame.
I’ve written about my struggles with these emotions a few times and my attempts to repair the problem, but I was missing a key element. I didn’t understand how this shame seemed to wipe out all the headway I made in my early adult years to heal from an early life of abuse and neglect, and this understanding was key.
Healing the Shame That Binds You
Quite by accident, I came across this wonderful book by John Bradshaw called Healing the Shame that Binds You. As I read the book, I began to understand that the shame I was suffering about my disability was the same kind of toxic shame I inherited from a childhood of abuse and neglect. As Bradshaw explains, shame is usually a healthy thing, but when shame becomes misplaced and internalized and we begin to define ourselves by our shame. A toxic situation for us and our loved ones.
“To be shame-bound means that whenever you feel any feeling, need or drive, you immediately feel ashamed. The dynamic core of your human life is grounded in your feelings, needs and drives. When these are bound by shame, you are shamed to the core.” John Bradshaw
In a person who is disabled in a society that shuns and sneers at the disabled, it’s easy to internalize this shame and let it define us. This is true even if we’ve never had a problem with toxic shame in the first place, which is pretty doggone hard to escape in present day America with familial abuse, childhood and internet bullying, and so forth.
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The Pervasiveness of Toxic Shame
Toxic shame effects every part of your life, from how you treat yourself and others, to how well you can cope with the outside world. It bullies us into making bad decisions, hurting ourselves and participating in unhealthy cycles. Toxic shame can create narcissistic or multiple personality disorders, bipolar disorder, obsessive compulsive disorder, addiction issues and more.
I’m with John Bradshaw when he says “Hell, in my opinion, is never finding your true self and never living your own life or knowing who you are.” Without resolving issues of toxic shame, it’s impossible to achieve fully knowing one’s self, because our motivations are marred by this shame. Finding the contentment or satisfaction you see and admire in others becomes out of reach.
Healing the Shame that Binds You isn’t a new book and toxic shame is probably a fairly well known concept for people familiar with twelve step work, but I feel it’s something that could benefit a much wider audience. I recommend reading the book if any of what I’ve said rings true for you. Toxic shame can exacerbate our already fragile health and further complicate issues with dysautonomia, as it often causes anxiety. We already have enough challenges in our lives without allowing toxic shame to complicate things further.
Healing the Shame that Binds You will not only help you understand the nature of healthy and toxic shame, but it will also help you on your way to doing something about it offering tried and true methods of healing the shame that binds you. It isn’t always easy work, but once you feel the uncoiling of those complex emotions and a new level of calm begin to build inside you from this important work, you will understand it’s true healing powers. You may even find improvements in your overall health and a new will to fight.
Right now, Healing the Shame that Binds You is available in audiobook format for free on Hoopla with your library membership. You can also find hoopla in your app store on Android or iPhone. You can also purchase it on Amazon in hard cover, paperback or Kindle.
There are many ways to tackle these issues and the depression and anxiety that tends to coincide with conditions like EDS, ME/CFS, Fibromyalgia and others. Be sure to check the Mental Health section of our Conditions page for a full listing of the resources available at The Zebra Pit! We have information on supplements that can help in addition to a variety of other options.
As always, thanks so much for stopping by!