“You’re so inspirational!”
“If you can do it, you make me believe that I can do it too!”
“Good for you! You’re a survivor, not a victim!”
What about those days where I am a victim? When I’m not inspirational, not somebody else’s ‘learning moment’, and I don’t want to be?
We don’t talk much about the ‘inspirational’ pressure to succeed on those who experience chronic illness and disability. The instinct is to brush the analysis away, tell them to ‘take the compliment’ or ‘we don’t expect it from you, really’.
But that’s not true.
I’ve spent today reading about the very inspirational Amanda Sullivan Love, a survivor of two car accidents that left her with extensive injuries. You can find her story here (or an early written form here if you’re more of a words person), but the short version is that she decided to overcome her obstacles, work really hard in physiotherapy, ‘forgive’ those who hit her with the cars, and now she’s doing Spartan Races with forearm crutches. Yay her.
Don’t get me wrong, I think what she’s achieved is amazing. I think a positive attitude goes a long way towards rehabilitation, and being motivated to attain goals is one of the cornerstones of remaining ‘healthy’ as someone who won’t ever be ‘healthy’ in the way normal people use the word. She’s taken her lemons and made some bomb-ass lemonade. She’s the kind of woman who belongs in inspirational docudramas, and inspirational biographies, and inspirational self-help books, and literally every Instagram tag for #inspiration ever. She’s awesome.
and I kind of hate her.
Stories like Amanda’s remind me that I can’t just decide to get up one day and be a #survivor instead of a ‘victim’. Doubling my physiotherapy actually reduces my ability to do the load I’m already doing. I have no one to forgive for my physical disability issues, because no one is to blame. Eating clean is a great goal, perhaps better left for those who are allowed to eat fibre (read: basically all vegetables).
I am incredibly fortunate to have an extensive, enthusiastic support network, but I know many of my friends with chronic illness do not. If they ‘eliminate all toxic people’ from their life, they’ll have no one. A common topic in my Ehlers-Danlos Syndrome groups is unsupportive and often outright abusive partners and families, and how isolated many are from their friends. Cutting out the ‘toxic’ is a luxury many of us simply don’t have.
I’m sitting here staring at Amanda’s photos. All muddy in her Spartan Races, married to a guy who understands her struggles and supports her, Instagram perfect pics in the yard captioned with appreciation for the muscle definition she never thought she’d have. Her posts about the power of positive thinking and forgiveness, about how everything is possible if you don’t give up.
Except sometimes it isn’t.
Sometimes you’re not the survivor.
Sometimes you’re not inspirational.
Sometimes you’re sitting at home in your dressing gown and pyjamas, three days before you’re due to leave the country, and you can’t summon the energy to shower let alone pack all your shit.
It’s okay to not be inspirational. You don’t have to be the reason your able-bodied friends can put their problems in perspective to overcome their hurdles. You don’t even have to be a reminder to your disabled or sick friends that they can ‘do it too’.
With everything people with chronic illness and disability go through, it’s enough to just exist. Maybe some days you can put on your Instagram-ready activewear and get all #inspirational, but you don’t need to. You’re not letting anyone down by just getting through the day. You don’t have to be an inspirational success story just because it looks way more impressive if you’re able to do normal people bullshit.
I’m not saying that it’s healthy to give up on having life goals, or that you shouldn’t try to achieve things outside your comfort zone. I just don’t think we have an obligation to do it because it looks good on the internet, or because it’s depressing to be ‘that sick friend’ who isn’t some inspirational success story.
It’s okay to just be sick, or hurt, or injured.
It’s okay to just be.