I’ve been a chronic illness advocate for quite a while now, and along the way I have encountered a wide variety of folks from all different backgrounds and levels of understanding about what it’s like to be chronically ill or to live with a disability. Along the way, I have made connections with other chronic illness advocates who share the same dream I do of helping to de-stigmatize the topic through open conversation. I’ve also met people who have not had exposure to the reality of chronic illness and react accordingly with naivety that can sometimes come across as insensitive ignorance.
When one party meets the other, I’ve seen some well-meaning advocates respond with frustrated vitriol while others immediately shy away in fear of bringing more emotional distress on themselves if they attempt to continue talking to the person they have (often wrongfully) perceived as intentionally ignorant. At one point or another, I have been both of these people.
Something that I have come to realize after allowing myself to be more open about what my life is like with my conditions is that a lot of people simply have never realized that disabilities… exist. I know, it shocked me as well. Sure, they might have seen some caricature of some disability stereotype on TV, but I have been surprised by the number of people who have opened up to me about the fact that they have never met someone who is actually disabled before. They had been so lucky in their life and their health that they had never had any direct exposure to anyone living with a disability. As such, they lacked the knowledge of the nuances those of us who have lived with a disability pick up on throughout our lives. Nuances like seemingly harmless questions that can actually come across as really insensitive or even offensive, or certain social faux-pas that make us cringe internally while the person committing them is oblivious to it.
It’s easy to respond with this perceived insensitivity with frustrated abrasiveness, especially when it seems to happen all the gosh darn time. For example, if I had a dollar for every time someone said “I’m tired, too” after I open up about dealing with chronic fatigue, I would have enough money to pay my own medical bills (that’s a lot of dollars). It’s tempting to snap at that person for being so insensitive, but I remind myself instead that this person’s intent with that comment is not to insult me. They are just communicating. It’s awkward and frustrating, but they have no idea that their “I’m tired too” comment feels like dismissal of how debilitating my fatigue really is. Having never lived with a condition that restricts their body in such a way, they have no way of knowing how frustrating my situation is. They have mistaken “fatigue” for “tiredness” and thought they have found a common ground where they and I can relate, so they inserted their experience with it in hopes of making a connection.
I have grappled with mild anger when faced with this response, and it’s been difficult at times not to immediately snap at them about the difference between chronic fatigue and mid-day sleepiness, but I remind myself to be patient, and use this as an opportunity to educate rather than make a scene I might later regret. Instead of getting mad, I might respectfully explain that my fatigue is medical. Depending on the person, I can even crack jokes and explain it in a lighthearted manner that won’t come across as abrasive or excessively touchy as it might otherwise seem.
Think of it this way- imagine a toddler learning about an electrical outlet for the first time. They see something interesting, and they reach out an inquisitive finger to try and learn more about it. You wouldn’t respond angrily to the infant (at least I hope you wouldn’t 😆). Chances are, you are going to do your best to explain to them “no, that will hurt you”, or if they can’t understand, redirect the infant or somehow restrict access to the potential danger.
While there are some people who are truly cruel and insensitive, the majority of people who make cringeworthy faux pas like this actually mean well and are just as naive as that toddler reaching for the electrical outlet. They need to be taught what is and is not okay, with unrelenting compassion and patient understanding.
It can get so frustrating and overwhelming dealing with masses of poorly informed individuals that it becomes easy to forget that each individual is separate from the others and you might have to teach the same things over and over and over again. This can be especially irritating when the topic is one of those nuances mentioned earlier that people in our experience understand but are completely foreign to others, since these things are hard as hell to explain at times and seem like common sense to those of us who have lived with them.
It is tedious, repetitive work, and can get so tiring, even the best of us are at risk of snapping once in a while at that one unlucky person who happens to ask a question we have answered so many times already that day.
While it might be momentarily satisfying, snapping at someone is not conducive to promoting understanding. It is the worst thing you can do when trying to hold a constructive conversation online or in person. Even if you are certain the person you are dealing with is just blatantly a willfully ignorant ableist asshat, snapping at them will never push society towards progress. What if you misjudged them, and now they have a negative experience with chronic illness advocacy that will thwart any kind of potential progress moving forward? What if they really are the asshat you suspected, and you just wasted your time and energy yelling at a troll that thrives on your emotional reactions? Neither outcome is desirable.
Patience is key. Give everyone the benefit of the doubt. I’m not saying you should play along with trolls and put up with their games with a smile on your face. Not at all. Simply put, if you feel like the conversation has no hope of being constructive, it’s time to make your point in a concise, thoughtful manner and walk away. It’s much better to leave someone with a heartfelt response that explains the situation and draws the conversation to a respectful close, than to take out your emotional frustration in the form of an angry wall of text, or smashing the block button to avoid the conversation altogether (though in some cases this is necessary).
This is just my personal opinion on the matter, and I might very well be wrong. I am still learning about my own “electrical outlets”, after all! So, this is definitely open to debate. What do you think about this? How have you come to your position on the matter? Maybe we can learn from one another on this. ❤️