I read a post called The Bizarre Prevalence of Invisible Illness Imposter Syndrome and the author uses different terms and language to describe what I have felt as well.
Essentially it is this pattern:
- With an invisible disability we mask our symptoms for a variety of reasons. To cope and manage working. So we will not face discrimination and stigma at work and the consequences of that. So our family will not worry about us. So we will not have to deal with fake sympathy and other social issues that crop up. All sorts of reasons.
- We are extremely good at our facade of well-being
- On very bad days when we cannot function and do mention something- people doubt us because ‘we were fine before’, ‘we don’t look ill’, ‘we don’t act like someone with chronic pain and/or a specific illness would act in their mind’. So we must be exaggerating, lazy, faking.
- Over years of this form of ableism and stigma inflicted on us we absorb some of it. Hell, we absorb a whole lot of it. And then we begin to tell ourselves a version of it over and over again.
- We begin to doubt ourselves in some ways. We are not trying hard enough. Maybe we are not as sick as we think and if we just pushed more it would be fine. Maybe we are just weaker than other people. Maybe we Are lazy. And this self-imposed stigma creates a lot of doubt in us. It can be extremely harmful to our self-worth.
Sometimes it’s simply that internalised ableism has reared its ugly head, and you feel shame for being chronically ill/disabled (it sucks, but it happens and I’m not going to sugarcoat that) – so you put on that able-bodied mask and go about your day pretending you are in tip-top health. But that mask can often end up working against you: when you do tell those people about your health, they don’t believe you’re sick because you’ve been so good at hiding it from them.Junkee essay
When I was younger and undiagnosed this was a pretty big problem for me. I had no diagnosis. Yeah, I did not feel well at all. Fatigue, lack of sleep and pain gave me some serious issues. But I always wondered if it was just that it was just Me. If they couldn’t find anything wrong… maybe it was that I couldn’t handle normal levels of pain and fatigue that everyone felt? How could I Know? Or maybe I wasn’t that sick? It lead to the mentality that if I just tried harder and pushed through the symptoms maybe it would be fine. That was a mistake.
“I felt this for years. I would be crying with pain and telling myself ‘It’s not that bad, you can push through, everyone else manages, why can’t you?’. Years of being told my period pain (later diagnosed as endometriosis) was “normal” made me feel like I was weak, instead of sick.” — Lynne RenshawJunkee essay
And then years later when my health was far worse and I was in the workplace this form of stigma was also way worse. So I would get into these states of denial Again. If I just pushed through the pain I could do what everyone else did. I could do my job and succeed and everyone would be happy. And then I would crash and burn. But once I went on a leave and recovered enough… I would do it again and again and again. Because this self-imposed stigma made me doubt myself and so I felt I must be able to power through it with just willpower. And I couldn’t. No way I could do that.
When I realised that my illness and the self-doubt didn’t begin at the same time, that was what made me consider that ableism was the catalyst for this new shithead voice in my brain. Ableism in a variety of different forms, but all of them rooted in distrust and doubt.Junkee essay
We absorb all that stigma. It is impossible not to
We doubt ourselves because of the assault of doubt we face from external influences; employers, co-workers, friends, family, doctors…
A heartbreakingly common experience when you have an illness that is invisible is people not believing that you are sick or in pain, simply because you don’t look sick or look like you are in pain. You look completely able-bodied, just like they do. That sort of ‘I’ll believe it when I see it’ mindset often leads to people vocally expressing doubt about your illness to your face.Junkee essay
I learned to despise my weakness. My self-worth tanked. My self-esteem tanked. My belief in my competence, my skills, my intelligence was basically nill.
Self-imposed stigma can cause a lot of harm to our coping. We have to know it is false and external voices influenced that negative self-talk
You are not faking your pain, you are not faking your fatigue, you are not faking your illness/disability. You are not faking on your bad days, you are not faking on your good days. This is real; you know it, your body knows it, and your brain knows it. Your illness/disability is real and valid.Junkee essay
For me, I really hard to learn the hard way. My repetitively trying to be ‘normal’ and pushing through the pain and then just crashing and burning really made things significantly worse on me emotionally and mentally. That was likely the darkest part of my life. And I almost didn’t make it through that part.
But after, I got pretty angry. Not at myself for my response to pain or stress or the whole nasty process I had endured. But for how I had been influenced by the discrimination and stigma inflicted on me. And I wish I hadn’t but I really had. All the things I began to think and tell myself over and over were just variations of what people had told me.
It took years to recover mentally and emotionally from that time in my life. And to lose the anger over it. To accept my limitations and disability for what it was. To find just acceptance over all. And to literally not give a damn what people say about my disability or their perception of it because I know and live the reality of it. If I do not cope with it and do not focus on my well-being I know the hell I will have to endure again… and I would rather not do that all over again, thanks.
That voice in your head is just repeating the crap it’s learned from societal ableism, so do your best to ignore and replace it by telling yourself this: “My chronic illness / disability is real. I am chronically ill/disabled on both the good days as well as the bad. I am chronically ill/disabled and I am not ashamed, I am doing my best and I am proud”.Junkee essay
I really wish we were not influenced by all the crap inflicted on us by society and people. And maybe we wouldn’t be if it were 1 time and 1 person. But it isn’t. It is cumulative. Years of it. All sorts of people in all sorts of ways. It is horrible that we take the burden of their inability to comprehend our disability, their ableism, and slowly impose it on ourselves. And every single time we tell ourselves we are lazy, weak, worthless… any of those things, our brain believes it. And every negative thought is usually repetitive. We just think them so many times without realizing it. Blame. Shame. Self-loathing.
And to stop all that? Takes work. For every thought like that, it takes 3 positive replacement thoughts to counter it. Every time. And slowly, over time we start to catch ourselves thinking them in the moment. And counter them faster. But it takes a long time to repair the damage all those harmful words caused to us.