“Don’t let illness define you,” they say. But this could be problematic.
“Don’t let illness define you,” they say. But this could be problematic.
We are often told to not let illness define us. But is this always possible?
A while ago I had a quick chat with my good friend Whitney Dafoe (check out his blog on living with severe ME/CFS) about whether illness defines us or not. It got me thinking.
We both agreed that it both does and it doesn’t in different ways.
Living with chronic illness impacts every single area of our lives from relationships to financial, educational and employment status as well as overall well-being and mental health. It impacts our daily lives as well as our access to resources. It impacts how we move our bodies and how we use our minds. It impacts our choices and what we choose to focus on.
Yet, we are often told (by able-bodied people) to not let our illness define us, but the reality is, illness does define us and shapes us.
I don’t mean to say it defines our soul, or that our bodies become a metaphor for who we are:
My body is weak, but I’m not.
My brain is slow, but I’m not.
But chronic illness has such a large impact on our lives, it’s impossible to ignore this.
The intention behind “don’t let illness define you” is a positive one, it’s never said out of malice. It suggests that even with a chronic illness, individuals can shape their lives, pursue passions, and maintain a sense of self-worth, something that most people with chronic illness long for and do their best to work towards anyway.
But there can also be ignorance and insensitivity (let’s just call it ableism) to the statement, for several reasons:
It invalidates our struggles
You bet I want to pursue my passions and shape my life outside of illness — I have a lot of passions and dreams and I do my best — but my illness gravely prevents me from doing this fully. I have written about navigating creativity when living with chronic illness here and about the loss of my inner world here, something that deeply impacts my creativity and productivity.
It creates a pressure to conform
It puts pressure on us to push ourselves into a higher level of functionality than we can actually do. Not every disability can be adapted or compensated for in order to mimic the functionality of an able-bodied person. There is nothing to compensate for my inflamed brain.
It disregards the emotional impact chronic illness has on us
Our inner world and emotional well-being are deeply impacted by our illness. Grief is ever-present and we constantly have to navigate sorrow, anger, fear and other big feelings on a daily basis.
It assumes we have control
“Don’t let illness define you” assumes that we have complete control over how the illness affects us psychologically, physically, mentally and spiritually. It also assumes we have control over treatments, how much support and care we get, and the level of stigma and discrimination that we have to fight.
It ignores diversity of experience
The saying “don’t let illness define you” has a sub-text that disability is bad and unwanted, and that an identity as disabled is not right. This ableist sub-text turns into: be more like us. Create like us. Produce like us. Live like us. Think like us. But the fact is that able-bodied people have a lot to learn from us. We can be more empathetic, more compassionate, more understanding, more nuanced in our thinking, more aware of other people’s pain and suffering, we understand stigma and suffering in a visceral way and develop a deep respect for people’s lived experience and truth. We have learnt to foster a strong resilience to challenges and hardships and we have a deeper appreciation for life. We may become less materialistic, able to live with small means and the ability to adapt to life’s changes.
There is nothing wrong with letting illness and disability define us. There is also nothing wrong with it not defining you.
Tell me…
How does illness define and shape you?
How does illness NOT define you?
Is it possible to not let illness define you at all?
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
Did you miss?
Tiny creative acts: How I stay creative in the midst of chronic illness
The shadow-side of mind-body healing: Overcoming shame and self-blame
Meditation: Witnessing our grief
Are you looking for all the meditations? Click here
So much food for thought here and so many salient points. I’m not sure where I stand with how shaped or defined by illness I am or I’m not so going to sit with that one a little.
Though using this instruction as an example “Don’t let illness define you” is something I would have previously described as “noise”. Don’t do this, don’t do that. You should be doing this you should be doing that. You can’t do this, you can’t do that. The ‘noise’ of all these statements was something I learnt to drown out at the time I found myself disabled by the illness I’d told doctors I’d been living with for 20years. It was like I woke up to what I knew to be true all along and one of the first things I did was learn to drown out the noise of everyone around me (friends, family, boyfriend, medical professionals included) and began to tune in to what I knew to be true all along. It was this way of being that got me started (6 years ago next month).
I was told I was selfish for doing it, that I didn’t know what I was doing, that I was too vulnerable to make decisions regarding my own health….more noise😒
On I continued to drown out the noise and tune into what I knew to be true all along.
It’s now the single most biggest thing I’m proud of myself for in my entire life. It feels like nothing will ever top this level of achievement.
It looked crazy to others but it reduced a lot of inner conflict in me.
My brain inflammation is so long lasting and feels like a torturous acoustic attack that presses into a "center of suffering" in the brain. This is different for everyone, because some describe it differently, and I didn't feel that until my spinal leak and severe ME came together.
So I think whenever there's torture, it's impossible to be yourself. We would also never suggest to someone that is tortured to be positive.
My identity is what's important for me, to me connection, creativity and curiosity. If my brain inflammation prevents that, it defines me 100%. If I can ignore it enough to do small versions of it, it does still define me but I can also be true to a version of myself. For instance, I can write my truth, choose how long I want to be on this earth. That's also part of my identity.