Shame, Guilt and Chronic Illness
When living with chronic illness, there are many ups and downs. There are good times, and there are the inevitable bad, and challenging times. Times in which it feels, like illness and its coexisting symptoms, are winning, having full control of our lives. Those days that feel that the pain and other disabling symptoms will never end; and as though the ups now ceases to exist and may never return.
When continuously ravaged by cruel and relentless symptoms, it is crucial to create a safe and reassuring comfort zone. I have found such places, or they would be a safe and revivifying sanctuary if the symptoms that accompany FND would not invade them.
"I have found safe and reassuring sanctuaries, or at least they would be if the symptoms that accompany FND would not invade them, leading to feelings of being unsafe and anxiety." Click To TweetThe Vulnerability and Fragility of Being Sick
Even in these harmless and benign sanctuaries, the severity of symptoms has become rebellious and uncontrollable. The trembling in the legs constant and the falls happen with no warning; its appearance sudden and shocking.
As such nowhere, not even my own home feels safe at this moment. And as a result, I have never felt more vulnerable. The vulnerability of being in so much pain that every step is jarring. And never knowing if the next step will be the last before my legs unexpectedly give way. A situation that often leaves me lying in a heap on the floor.
Chronic Illness: A Harbinger of Shame and Guilt
As such, these feelings of vulnerability and fragility become harbingers of shame and guilt. It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness.
"It seems strange to feel guilty for being ill; for something that we had no say in and have no control over. But despite this, both guilt and shame become another unexpected side effect of living with chronic illness." Click To TweetGuilt, an often too familiar emotion experienced when becoming chronically ill. But one, that is easy to understand its origins.
The feelings of guilt arising for being a burden on others, and for not doing our share. Remorse ascending for being sick as it begins to affects others so significantly. Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help.
"Guilt and shame originate for the things we can no longer do, guilty for cancelling plans, and for needing constant help." Click To TweetShame, on the other hand, is far more complex. Whereas, guilt arises from feelings of regret about something you have done wrong, or for things you can’t do. Shame, on the contrary, can be felt even when we have not done anything wrong. An emotion connected more to who we are and who we believe others perceive us to be.
The Cruel Whispers of Lies By Shame About Life With Chronic Illness
When living with chronic illness, its mere existence permeates through every facet of our lives. And as it does so, the feelings of shame begin to cut to the most profound fragments of our identity. And although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick.
"Although illness claimed us, without our consent and for which we have control, we begin to feel shame for being sick." Click To TweetShame claws it’s way into our subconscious, whispering vicious lies, implying that we no longer matter, that we no longer have worth. Shame speaks words of inadequacy, throughout the darkest and most challenging days with chronic illness and its symptoms.
Often, when driven by shame, those living with chronic illness tend to push harder, ignoring symptoms, and neglecting overall health. But which only results in worsening health, symptoms further deteriorating when compounded with stress.
We try and fight against these lies, but often through the darkest times, shame wins as it attacks our character. It often paints us as lazy, incompetent, unreliable and weak. It persuades us, whether real or imagined that others see us as fakers, catastrophisers, or merely an inconvenience.
Life Defined By What’s Wrong
As I lie here, disabled by the symptoms that continually inflict my body, I can say that I feel shame that I am ill.
I feel shame at the thought that the illness has gone on for so long. Shame torturing me with ideas that if only I was stronger, or had made better choices, then surely I could have overcome this affliction long before it started to dictate my entire existence.
"I feel shame that chronic illness had become so intense that my whole life had become defined by what's wrong, and not managing to overcome this affliction long before it started to dictate my life." Click To TweetI feel shame that chronic illness has become so intense that my whole life has become defined by what’s wrong.
The Shame Here and Now
And as I lie here, disabled by severe and relentless symptoms, and the limitations that currently rule my life, shame is once again whispering its vitriol lies. Often insinuating that these limitations are entirely in my head if I were only stronger than I would be able to defeat such restrictions on my life and as such claim my life back from the evil clutches of FND.
The shame further reinforced when such limitations win, and I am left unable to do or go somewhere that I had previously planned. Or the times that I had to leave suddenly after starting to feel unwell; the symptoms suddenly appearing out of nowhere. Or the times when the anxiety about suddenly becoming ill or symptoms suddenly appearing, thereby becoming victorious over my aspirations and hope.
I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness. The shame and guilt are becoming overwhelming at the thought that this is now my life. And the idea of never getting better.
"I feel shame for those time that the positivity that I so often exude gets chipped away and instead most days during the challenging times, I battle overwhelming feelings of anxiety, despair and hopelessness." Click To TweetAnd I feel shame for the number of times the symptoms of FND have knocked me down, unable to get back up.
Fall seven times, get up eight | Japanese Proverb
It is easy to remember the times when knocked down and unable to get back up by the severe and debilitating symptoms of chronic illness. And as a result, we forget the number of times when knocked down, but through strength and resilience, we immediately get back on our feet.
Shame implies fault. We need to realise that there is no fault when living with chronic illness. Instead, we need to understand that there is instead a basis for pride. Pride, as we still we stand and rise, and continue to face each day in the face of adversity. To be grateful for that which we can still do despite the many symptoms that arise each day.
In her book, Daring Greatly’, Brené Brown writes:
“Shame derives its power from being unspeakable…If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither.”
Opening up about feeling shame and guilt in my battle with FND is incredibly difficult and scary. But keeping them bottled inside, I have learned can be just as damaging. Choosing to acknowledge such feelings, no longer gives them the power, and allows me to unshackle myself from its lies.
From Shame to Self-Compassion
Perhaps my ‘Word of the Year’ therefore should be self-compassion. To reject the idea of self-blame, and instead to treat me with the same kind and non-judgemental manner that I would treat someone I loved.
In the end, we are the ones that need to validate our symptoms, listen to our bodies and take appropriate action on its behalf. To be our advocate and champion, and to realise that we are of better service to everyone else when not driven by shame, but self-compassion.
It’s challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers.
"It's challenging enough to meet the daily battles that accompany life with chronic illness without also internalising the lies that shame continuously whispers." Click To TweetThe truth that despite chronic illness making us feel weak, and ‘less than’ we are in fact, incredibly strong and resilient. We achieve incredible feats every day just by being able to get out of bed.
Every day we learn essential lessons in gratitude and grace. And even though the conditions that afflict us, from which we cannot escape, it does not have to define everything we are. It does not have to determine everything we do or the relationships with those in our inner circle.
Caz / InvisiblyMe
Oh Rhiann. This is such a good post. I struggle quite a lot with guilt, but I’m not sure where it came from. My mother says I’d apologise for breathing if I could and that I feel guilty if I don’t feel guilty. Guilt, and its sidekick shame, can sneak in anywhere. I find guilt particularly pervasive and as yet, I’m really not quite sure how to deal with it. I feel guilty for being sick, guilty for not doing more or doing something with my life, guilty for letting people down and letting myself down because of changing plans because I’m too poorly, guilty my folks worrying about me, guilty for having to use up NHS resources, guilty for being sad but guilty for smiling. It never ends.
You’re right, it’s there without doing anything ‘wrong’. And although we know deep down it’s not our fault, that we didn’t choose to be sick or choose our illness or anything close, it doesn’t tamp down the guilt factor. That shame you’ve felt for being ill, thinking that maybe you could have done x/y/z, is so, so pointless; none of it is your fault, you can only deal with the hand you’re dealt and I for one think you do a bloody brilliant job of keeping going and doing what you do, especially with your blog and supporting others and everything that comes with that. Your life may evolve rather around your illness and what’s wrong, but that’s not ‘who’ you are. There’s far more to you than your illness.
That’s an interesting quote from Brené Brown. I do think there should be more dialogue around these issues of guilt and shame. The two go hand in hand and can be intensely personal and private, making us wither into ourselves and cut ourselves off from the world, rather than us cutting the shame out.
Very nicely done with this post ♥
Caz xxxx
Rhiann Johns
Oh Caz, thank you so much for your lovely words as always. It really means so much, this post, in particular, was incredibly difficult to write and coupled with self-doubt, it really made me question whether to press the ‘publish’ button at all. You make some really great points too, and like you, living with this shame and guilt I am not sure how to address these issues either, or more importantly how to overcome them. Again, thank you so much and I hope you are doing as well as can be. Take care, Rhiann x