An Open Letter to Able-Bodied Individuals

Dear able-bodied individuals,

If you lived in my shoes for just one day, you would understand—the trauma, the sacrifices I have to make, the constant pressure to perform more abled so others don’t interrogate me on why exactly I can’t do something because no matter how much I explain, you still won’t understand or will choose to judge it regardless.

I wake up and fight every single day

I didn’t choose this life. I don’t enjoy digging myself into debt, spending hundreds—thousands—of dollars on treatments that may not even work. I don’t enjoy spending my days having to put my dreams and goals on pause, sitting around waiting for the day where I “feel better” enough to tackle them. Or how I’m constantly tortured by my own thoughts because there isn’t a day that goes by where I don’t think about what my life would be like if I wasn’t this sick. I don’t enjoy having to abide by my limitations. Every day is calculated. Please remember that just because you experience life one way, that does not mean that is my experience or should be my experience. I have many different variables that forcibly dictates everything in my life.

My illness shouldn’t be life threatening to be taken seriously

Just because I’m not dying, doesn’t mean my life hasn’t been taken away from me. I often feel with my own experience and symptoms that, death feels incredibly imminent. It’s traumatizing and overwhelming. So much of my identity and time has been stolen from losing the ability to take care of myself in the ways you do every single day without struggle—from brushing my teeth, to showering and shaving, to going up a flight of stairs, making breakfast or filling up a water bottle. These are all things I am slowly losing the ability to do or am unable to keep up with the same way an able-bodied individual could. Those of us who live with an disabling illness are judged far too quickly and more often than not don’t receive adequate support simply because the state of our health isn’t terminal.

I am exhausted of constantly being silently put on trial

It is assumed that because of this, we are doing just fine on our own or are not pushing ourselves enough. All we’ve ever wanted was to have our voices heard and experiences at the very least respected, if not validated. It is not your place to judge how we choose to go about our daily lives, or to put any expectations on us. It is not your place to disbelieve our boundaries or limitations. Stop trying to investigate flaws in someone else’s experience and start believing disabled people when they tell you what living with their illness is really like.

If someone you know is struggling with an invisible illness or disability, offer your support as you would for someone who has an illness that is life-threatening. You shouldn’t have to pick and choose what illnesses you want to support. What many people don’t know is that many of us often experience similar symptoms, but feel like we are stuck in the in-between of living and dying. We also feel isolated and lonely because so many of us are homebound.

Supporting those you know with disabling illnesses is more simple than you think, and also incredibly necessary in society as we are often casted aside. Please help advocate for those whose voices remain unheard.

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