It’s Saturday, my partner’s first day off. All week we’ve been looking forward to spending time together, but instead, I’m in bed while my partner prepares lunch for the family. My mind is muddled by the prescription medications meant to ease my symptoms, my body immobilized with pain. And as I struggle to imagine doing anything this weekend, my mind is wracked with guilt.
This is not a new experience for me, to feel guilt over my body’s limitations. In the past, I’ve felt the guilt of missing out on a friend’s party, of not being able to go for a walk with my child, or of being in bed instead of at a family member’s barbecue. I’ve apologized for canceling on hangouts, for rescheduling events, and for backing out last minute of obligations.
All these times I find myself in bed, overcome not only by pain and fatigue, but also by my own guilt.
Getting to the Root of It
Guilt, though, implies that I have done some misdeed; that by being chronically ill or experiencing symptoms of my disabilities I’ve done something wrong. Is this truly how I see myself? Do I actually feel guilt for being sick? Or is it shame I feel: deep-seated feelings that my disability somehow makes me less worthy?
Writing it out like that, I see how demeaning and self-deprecating that line of thinking is. And yet, if I’m being honest with myself I must admit that maybe those are the things that deep down I feel about myself.
Do I actually feel guilt for being sick? Or is it shame I feel: deep-seated feelings that my disability somehow makes me less worthy?
It really is no shock that I feel those things though. Disabled people face stigma on a daily basis because they are perceived as lazy or flaky, when the rest of our culture puts a high premium on productivity. From a young age, I, like many children, was constantly asked what I wanted to be when I grew up. Even as an adult, one of the first questions I’m asked upon meeting someone new is: “What do you do for a living?”
So on days when I can’t do anything—when I’m struck down by a migraine, or when my joints ache to the point it hurts to move, or when my fatigue dictates that I stay in bed— my mind swirls and spirals with self-deprecating and hurtful thoughts, telling me I’m no good, a burden, a disappointment. My mind, steeped in internalized ableism, tells me that my lack of ability to do makes me somehow lesser and I’m overcome with those feelings of guilt and shame.
I’m tired of feeling guilt for things I can’t control and shame for who I am. As such, I’m trying to shift my thinking from one of guilt towards one of gratitude.
Gratitude Towards Others and Myself
One of the ways I’m trying to do this is by changing the way I deal with canceling plans or not being able to participate in life the way I want to. Instead of apologizing, I’ll try to thank them. For example, if my child asks me to go for a walk and my pain levels are too high, I’ll try to say something like: “I’d like to, but my body doesn’t feel up to it today. Thanks for always trying to include me.” Or if I need to cancel something with a friend I’ll say: “I’m really bummed and hope we can reschedule this another time. Thanks for understanding.”
Instead of berating myself for the things I can’t do, I try to be thankful of the ways my body is supporting me.
In this way, I am no longer apologizing for my chronic illness and symptoms I can’t control. I’m allowing space for my feelings of disappointment, but not letting guilt and shame overtake me. I’m not apologizing for being me; instead, I’m thanking others for who they are.
Similarly, I’m also trying to be grateful for myself. Instead of berating myself for the things I can’t do, I try to be thankful of the ways my body is supporting me. I remind myself that by forcing me to slow down, I am better able to be mindful of the present. I try to thank my body knowing what it needs, and what is best for me. I practice self-compassion, and remind myself I am deserving just as I am, and that our culture’s ableist standards do not define my worth.
Accepting My Humanity
Finally, I’m trying to work to fully accept the fact that no humans can be perfect. I can’t do it all, be it all, and hold it all together, all the time. All people—myself included—will have good and bad days, times we feel poorly, times we’re down on ourselves, and that’s okay and normal.
This morning I wrote in my journal: “I am allowed to be a mess. I am allowed to fall apart. I am allowed to experience all my emotions.” In accepting my humanity, I not only make room for grace and compassion, I can accept my feelings of guilt for what they are: feelings, but not a true statement of my worth.
By working to shift my perspective rom guilt and shame and towards compassion, gratitude, and acceptance, I’m able to learn to love myself more. On those days I’m overcome with pain and can’t participate in the world in the ways I’d wanted to, I want to be able to focus on taking care of myself instead of wasting time feeling guilty.