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Things People Say That Can Be Hurtful to Those With Illness or Disability

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I admit I wasn’t always sick, although I was predisposed and felt less than “normal” even in my youth. I admit I was ableist as well, because I was looking at things from my own subjective lens, and ignorantly so. While struggling with Lyme disease has debilitated me both physically and emotionally, there was a blessing to it: my newfound understanding of what it’s like to be chronically ill and the growth of my compassion for people with other conditions, and whatever hardships human beings undergo in their life journey.

 

That said, empathy isn’t always inborn for people, it’s a learning curve that needs to be cultivated ad infinitum. Expecting a person to feel compassion from the start for something they never experienced before and don’t have the slightest clue about is unfair, albeit justified, but educating them can go a long way to nurture positive, satisfying and empathetic relations with them. It’s silence that hurts all parties involved.

When I got sick with Lyme disease – and even well before, when I noticed my health and well-being degrading gradually to the point that I wouldn’t go out as much or function like a regular person – I started noticing certain things said by able-bodied people that sincerely hurt me. The statements are, of course, well-meaning, but they stem from ignorance and ableism. I spoke a great deal with those in similar situations and they confirmed being injured by the equivalent statements. And these well-intentioned statements and acts of kindness not only hurt the chronically ill and disabled community, they do something even worse: they continue to propagate discrimination against people who are “abnormal” and compelling us to be “normal” – and pronto!

Please, family and friends and acquaintances of the chronically ill and the mentally and physically disabled, do not say or do the following if you want to have our best interests at heart.

Don’t tell us at least it’s not [insert ailment name].

It doesn’t hearten us to feel hopeful and grateful when someone tells us that at least our illness isn’t terminal or at least we can walk and talk and eat and sleep. For one, there are people who never get well and have to live with their illness for the rest of their life. When it comes to a mental illness, there’s no such thing as mind over matter and being cured of it, because it’s an actual illness that needs to be addressed and managed indefinitely.

And physical disabilities don’t suddenly disappear – they have to be accommodated forever. Likewise, experience with illness is individual. Who’s to say one person’s struggling takes precedent over another’s? All I can say is the struggling is real and painful and isolating for anyone who has to live with that every day. If we could all acknowledge that, there would be better understanding and more research funding for illnesses less recognized by the healthcare community.

Don’t give us unsolicited, ill-informed advice.

Don’t tell us to try this supplement because it helped someone else you know or to try yoga or meditation or qi gong because you read an article about someone who got cured of their ailment by doing the latter. You may not realize it, but we know practically everything about our condition and may even have tried everything possible to heal or manage it; only we and our practitioner know what’s best for us, not you. If you’re so inclined to give a recommendation that may – or may not – be helpful to us, do ask us first if we want to hear about it, and be mindful when you do. Don’t force your advice upon us when you may not have a full understanding of our condition or disability and what it’s like to walk in our shoes.

Don’t call us derogatory names.

We’re not “crazy,” we’re not “retarded” and we’re not “hysterical.” We’re not exaggerating, we’re not attention-seeking. We’re seriously ill or disabled, and our struggling – oftentimes invisible to the bare eye – is real no matter how difficult it must be for you to perceive and grasp that. So please refrain from calling us names that don’t do us justice, that make us feel less than.

Don’t trivialize and invalidate our struggling further.

Other ways you can further hurt us is by not believing us when we talk about our illness, by comparing it to something that is deemed more serious by abled people, essentially not taking our struggling in earnest. And please don’t tell us to “get off our lazy butts and get a job” or “get better already and start moving forward.” Some of us are healing slowly, while others are coping. Some of us may never get well and have to rely on pain management and therapy to maintain some semblance of wellness, to be able to do some of the things that able-bodied people do effortlessly.

Instead, you can be a supportive ally and advocate to the people with chronic conditions, mental illnesses and physical disabilities by first listening to us, validating our hardships and educating yourself on our struggling. You can – and should – admit you’re privileged in that you’re abled and your life experience is truly not the same as ours.

Lastly, you can call others out on their ableist ignorance when you witness injustice being done against people with physical and mental disabilities. You may not be comfortable with it at first, but it’s the only way to put an end to the perpetual damaging social stigma being done against us and our experience as people who do not navigate the world the same way as healthy, abled people do. And this goes without saying: I hope someday in the near future we can finally stop justifying and defending ourselves and each other and recognize that we matter, that our lives matter.

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Thinkstock photo via Ryan McVay.

Originally published: July 18, 2017
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