You know I have been chronically ill since I was a kid, but, oh, it got worse. But the story I used to tell myself was That was my Body, not my Mind. And I could still achieve anything I wanted as long as I paced the body. I thought I would have the life I wanted just with more moderation.
A pretty story. And one I learned was very wrong. Although I coped back then exceptionally well I learned about the endless fatigue and the cognitive dysfunction and the inability to get a good sleep. And then the migraines came. My mind was betraying me as well. I couldn’t think as well. I couldn’t concentrate and focus well. But you know I thought, hey, I will aim for a desk job and it will be fine.
It was not fine.
That is when the story I told myself became ugly, distorted and my self-worth died a slow death.
I felt ashamed I couldn’t seem to work like other people. I couldn’t push through the pain. And I felt everyone expected me to. And I felt shame I was ill.
I felt weak. Why couldn’t I just function! Why couldn’t I cope with all the pain well. I was just weak. Other people didn’t have these problems. And when I became depressed, oh, I felt that was a true weakness that was my fault.
I felt like I was a failure at work. As a person. And just fundamentally useless. A fraction of a person
Years of not being able to force myself to work and taking too many leaves due to illness and the discrimination and ultimatums at work… well, my self-worth crumbled under the pressure. I felt I had no worth at all. I felt embarrassed and apologized a lot because I knew I had no worth to anyone.
And I struggled with this for a very long time. Until I gave up full-time work. But I still struggled, still missed work, still couldn’t function well at work. And now, yet another leave for this endless vestibular symptoms due to vestibular migraines and an issue with my inner ears. And I had to come to terms with this.
None of this was my fault. I knew it now. I knew it. I had been in denial for too many years. And suffered so much for pushing through the pain to function… and it had been very unrealistic. It could not be done. And that wasn’t my fault.
And I am not weak. I am strong for coping, for enduring, and for surviving. And mental illness isn’t a weakness. I denied that depression too long as well and wish I had effective treatment far before I did. Wished I had just a little pain management too. But I wasn’t weak. I had this thing that if I couldn’t tolerate the pain that was a weakness. I don’t know where that came from but likely my tendency to perfectionism.
There is no blame or shame in illness. It happens to us, we are not at fault for it. Now I understand that. And with that, I have finally gotten rid of the guilt… that I should feel guilty for what I could not do.
Now self-worth, when it is pounded down, took a lot more time to recover. I had to re-assess my productivity, my sense of self, my self-identity. I had to make a new story about myself that shone a light on my values. The good things about me. The small things I can do.
We have to sometimes assess the story we are telling ourselves about illness and our lives as a result of it. If you find you have these beliefs that do not help you cope or help with your wellbeing these are the ones you have to work through. It is all about our self-stigma. We know about the stigma there out in the world… but sometimes we absorb that and turn it on ourselves.
Stereotype awareness was found to not be significantly associated with the three levels of self–stigma. The remaining three levels were significantly intercorrelated. Self–concurrence and self–esteem decrement were significantly associated with measures of self–esteem and self–efficacy. These associations remained significant after partialing out concurrent depression.
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Self-stigma causes low self-worth and a low self-esteem which can then affect our coping and self-care for our illness. “Another obstacle that may result from stigma is “self-stigma,” whereby people with a mental illness adopt and internalize the social stigma and experience loss of self-esteem and self efficacy. ‘People with a mental illness with elevated self-stigma report low self-esteem and low self-image, and as a result they refrain from taking an active role in various areas of life, such as employment, housing and social life,’ Prof. Roe explains.” Science DailyReducing self-stigma improves self-esteem and our ability to be in the world with illness
In an attempt to address this problem, Prof. Philip Yanos of City University of New York Prof. David Roe and Prof. Paul Lysaker of Indiana University School of Medicine, with the help of a research grant from the National Institute of Mental Health, developed what they term “Narrative Enhancement Cognitive Behavioral Therapy (NECT),” which is aimed at giving people with a mental illness the necessary tools to cope with the “invisible ” barrier to social inclusion — self-stigma.Science Daily
A lot of the research focuses on mental illness. Likely because the stigma around mental illness is so severe we feel we cannot even talk about it. And certainly, I hid my depression for years due to self-stigma. But I know for a fact, it affects us all.
They all also mention a decrease in self-esteem. Which is a problem. We feel like we cannot accomplish things because we just will fail. Because we suck. Why do anything at all when we just will ruin it? Why try? And as a result, we self-isolate and do not attempt things we might have wanted to.
A high prevalence of stigmatization was identified in individuals experiencing chronic pain and a significant correlation exists between the type of stigma experienced, the level of pain intensity and other psychological factorsincluding self-esteem, anxiety, and depression Journal of Pain and Relief
So self-stigmatization warps the story we have of ourselves. A lot of research to show it. Not a whole lot out there about how to deal with our own self-stigma to adjust that story we tell about ourselves. I found very little about that.
But what I can say about combatting self-stigma is:
- Develop and encourage self-compassion. My psychologist was constantly telling me I was doing quite a lot for someone with a burden others do not have. I had to forgive myself for not holding up to perceived standards and be realistic. I am only human. And I have a chronic illness. I needed to have some compassion about that
- See a good psychologist or therapist that you are comfortable with and you can work through these issues we all have. It helped me immensely because in addition to chronic pain I had major depressive disorder.
- Write down the negative beliefs you have about yourself. And really think about where those are coming from. Think about how that may be different than the truth about yourself
- Journal your feelings and frustrations and introspect about them. We all have emotions. We all have bad days. But think about where these emotions are coming from. A bad day? Or blame, guilt, feeling useless… and really think about that based on the fact you only have a few useable hours a day compared to normal people with a hell of a lot more.
- Start a mood tracker. There are apps for that as well. You can see how mood is reflected by our bad days pain wise or illness wise… but also when we feel like we were not productive enough or good enough.
- Start a gratitude journal. Just to reflect on all the good things in your day you are thankful for.
- Set small achievable goals for yourself and write them down in your journal. Also write down your accomplishments every day, no matter how small
- Do set challenges for yourself. Small things you can push yourself to do despite this feeling you are not good enough. One aspect is socialization. Never beyond your limits but nudge those limits a little.