Toxic Shame & Chronic Illness

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.

If you suffer terrible shame from your disabling chronic illness, you're not alone. One of the hardest things about disability today is society's perceptions of the chronically ill and the value we place on production. Help can be had. Here's a great book that will help you get started.
Toxic Shame & Chronic Illness

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

John Bradshaw's Healing the Shame that Binds You was instrumental in understanding the true source of my shame and put me on the road to healing a lifetime of toxic shame
John Bradshaw’s ‘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.

With society's focus on production, it's easy to develop toxic shame about your disability or chronic illness. Don't worry. There are ways to cope with these feelings and learn to embrace life with chronic illness or disability.

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!

17 thoughts on “Toxic Shame & Chronic Illness

  1. I’m glad you revamped and reposted this. Shame is such a big part of the chronic illness journey for many I think. There’s a difference between shame and guilt (I think I struggle more with guilt, though I’ve no idea why) but they’re linked and can have such a profound impact. I’m just so sorry for what you’ve had to go through, the experiences you had when you were younger then compounded by your health issues… It’s heartbreaking to read because you just want to shout ‘NO, nothing to feel shame for, no shame no guilt, you’re an awesome warrior of a woman and you deserve only kindness from others and yourself’. Of course nothing is that easy or straightforward…  ♥ ♥ ♥ ♥
    Caz xx

    Liked by 1 person

    1. You’re so kind, Caz. Thank you. My life is so much better since I figured out how shame factors into all of it and found some great methods to help me heal. I hope everyone who experiences the ravages of toxic shame does the same. The difference between guilt and shame is an important distinction, but I think it can be just as destructive to our mental health when it begins to affect how we feel about ourselves and shapes our motivations. I think one of the most important things I’ve learned about mental health is that we tend to shape our own reality and sometimes our perspective gets a bit blurry! Thanks for offering your insight and adding to the conversation! Xx

      Liked by 1 person

    1. Thanks Jo. I’ve managed to improve all of my mental health issues the last two years. I wanted to reshare this now that we’ve grown so much. It seems to be a pervasive issue and it’s not easy to figure out. Xx

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    1. I definitely commiserate with your feelings, Katie. I would lose my temper over every little thing and my husband had to deal with that on top of the other added burdens. It’s an awful cycle for everyone, most of all, for us. I hope sharing my story helps a little and tge book helps a lot. Thanks for commenting. I think it helps others to know it’s quite common, but a hurdle you can navigate with a little work! Xx

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  2. “once you feel the uncoiling of those complex emotions and a new level of calm begin to build inside you…” Is like a beacon of light shining in the distance, one that I saw in others, but never thought I’d be able to reach. Now, thanks to you, I know I can get there eventually. Thank you just isn’t enough, but it’s all the words I have.

    Liked by 1 person

    1. Thank you so much, my friend. I’m in awe of your strength and bravery and dedication to change. I’m just glad to be able to turn such ugliness into a positive force for change and that you’ve allowed to to take part in your transformation.

      Liked by 1 person

    1. I hope you find it as helpful as I have. I’m having a little difficulty staying on task with my follow up work sometimes, but they really do help when you work them!

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  3. 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 2 people

    1. 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 3 people

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