The Toxic Shame of Being Disabled

5191gfd1hql-_sx322_bo1204203200_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 take care of yourself, let alone hold a job or take care of your kids and your house, 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 and this can lead to toxic shame.

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 and lose the faith of friends and family who do not believe that their illness, or the extent of their illness, is real.

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, or felt I wasn’t being understood, or asked to do too much. I became enraged every time I felt embarrassed by my cognitive decline and memory loss, the fact that I couldn’t write anymore and that my peers were being unforgiving and callous about it. 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, 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.

Then I came across a 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 my abuse and neglect. As Bradshaw explains, shame is usually a healthy thing, but when shame becomes internalized and we begin to define ourselves by our shame, it becomes toxic.

“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 and those who are less than fully productive, it’s easy to internalize this shame and let it define us, 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 the pervasive number of unhealthy people around to help pass around heaping helpings of shame at every turn.

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 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, or finding the contentment or satisfaction you see in others.

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 and 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’ll find hoopla in your app store on Android or iPhone.

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3 thoughts on “The Toxic Shame of Being Disabled

  1. I was fortunate enough to be diagnosed with CFS almost immediately back in 1989; even then, the infectious diseases specialist who diagnosed me said it was a terrible diagnosis he had to give me.
    Despite that, it took three tries to get SS Disability, and then only years later when the SS had been told from above to stop blocking those with CFS from getting benefits.
    So I avoided SOME of the shame – though I’ve never felt there was something I did (other than work too hard, get a PhD in a man’s field, and dare to have children) to have damaged myself so.
    It must be so very difficult to deal with all that disbelief from the people who should have helped, on top of the horror that is a typical case, or the very special horror of our sickest victims.
    I always wish I had gotten AIDS – or something else fixable. I’d be back to my life by now.

    Liked by 1 person

  2. I understand where you’re coming from…all the times I have wished I had something already well studied! One can only hope that someday CFS will finally get the full attention it deserves and that it will have the kind of funding AIDS has.

    Liked by 2 people

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