Explaining My Life to the Stranger Who Will Decide If I'm 'Disabled Enough'
This morning I had to sit in a room and explain to a complete stranger, in graphic detail, how my illness affects my everyday life, while he tapped away on a computer, in order to asses whether I am “disabled enough” to continue to receive extra money and keep my Blue Badge parking permit.
Having to talk about my life out loud, having to calculate just how many days are spent in pajamas that should have been washed three days ago, having to tell a complete stranger how many times a week I feel well enough to shower, and feeling sick when I tell him that it is only four days out of every seven on average.
Realizing that I haven’t been to the supermarket in nearly a month, and to church in nearly three. Admitting that I take sleeping pills every night in an attempt to stop myself from having to get up three times to empty my ostomy bag, knowing this in itself is a risk to my bedsheets.
Telling him about leaks, and admitting to myself how rarely I am able to cook a meal from scratch because it is just too exhausting.
Hearing my mother talk about how upsetting it is for her to witness me falling asleep mid-conversation. How I have to wear makeup every day to cover the black pits under my eyes.
Telling him that I spend a third of my time unable to do anything, only to have my mom interrupt and tell him that I am being conservative, and actually it’s more like 50 to 60 percent of my time.
Breaking down in tears when he asks about my life before illness and he remarks how full and busy my life used to be.
Having to calculate how far I am able to walk unaided, and feeling exasperated when I try to explain how futile that calculation is, because on the days when I am “well,” I could get around a supermarket, but there is no knowing when the bus will hit, and when it does, I need help to get back to my car. Explaining that on bad days I can barely lift my head off my pillow, so on those days I can’t walk at all, so yes, I am immobile (I say a third of the time, my mom and partner say much more).
Frightened to mention that I am a member of a theater group, and that I have managed to get to rehearsals (even though I spend the next day recovering, and two weeks after show week was spent in bed), because that would suggest that I am “well,” as everybody knows that disabled and chronically ill people cease to be disabled and chronically ill if they are able to have a social life, or manage a supermarket shop.
Knowing that this stranger is not only judging me, but using my words potentially against me. Knowing that if I am deemed “not deserving” of this extra money, my life will get exponentially more challenging.
Coming home, and having to go straight to bed to sleep for two hours, because the whole process was as exhausting as it was humiliating, and waking feeling not a bit refreshed.
Feeling pain in my abdomen and wondering if it’s because of the stress of the day, because I’ve spent the day having to talk about pain and fatigue so I’m more aware of it, or if it’s just my body reminding me that we are sworn enemies.
I spend my life trying to be “well enough.”
I do my hair, put on makeup, perfect my smile, take my painkillers, and get on with it.
A massive chunk of my life is spent pretending to be “well enough.”
And now I have to wait for up to eight weeks while the Department of Work and Pensions looks at the report this stranger had written about me and how my illness affects my everyday life, to decide if I am “ill enough.”