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What to Consider Before Expressing Empathy for Someone's Illness or Disability

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As someone who talks pretty openly about my disabilities, my illnesses and my pain in both personal and professional settings, I’ve noticed a really unfortunate trend. Well, several of them, but one I wish to touch upon today. And that’s what I call “misplaced empathy.”

If someone asks about my conditions (and genuinely wants to know, not just being nosey in line at the grocery store), I am more than happy to explain what’s going on with my nerve endings, collagen production (or lack thereof), brain function, joint mobility and dislocation, the use of various mobility aids and medical devices, what have you. I’m not embarrassed by my health, my disabilities, my cane, my braces. In fact, I kind of love exactly who I am: a badass disabled babe.

(Yes, disabled. Dis. Abled. Not “challenged.” Not “differently-abled.” Not “special.” Not “learning differences.” Dis-fucking-abled and proud!)

But here’s something that really irks me. When someone asks about my FMS, EDS, migraines, anxiety, depression, dyslexia, ADD, trauma, whatever, and I am open about what I physically and/or mentally go through, that’s kind of a big deal. Even though I’m happy to talk about it, it’s still really personal. Especially when I start breaking down how I have to plan for the future in regards to whether my current or next dwelling/car/office will be wheelchair accessible, and having to work my ass off to build businesses now that can still support me when I can no longer work, or needing a doctor who will keep the correct type of detailed records so that, when the time comes that I have to file for disability (again) I will have a solid paper trail, or about how I struggle with my educational pursuits because my brain doesn’t process information normally. That’s intimate shit! And a lot of the time people get uncomfortable, or sad, and very sympathetic and that’s understandable (though being sad helps no one).

But sometimes – more often than you might suspect – there’s a weird response. Empathy. But not empathy like you’re imagining, but a really misguided, misplaced empathy. Like “oh, I just listened to your story about how you’ve been in excruciating pain every single moment for over 10 years now, and about how you get parasthesia down your limbs which causes pain and reduced mobility, and how your joints have to be forcibly relocated on a regular basis, and how you’re no longer really feeling physical sensation properly, and I totally understand. I get aches and pains, too! And sometimes my back cracks when I get up in the morning. Chronic pain is awful, isn’t it? I feel ya, fam.”

In those moments, even though I fully understand how well-intentioned this response is, how it’s an attempt at kindness as well as combatting the discomfort of hearing about such, well, discomfort, I often find myself having to talk myself off the ledge of just reaching out and *thwap!* slapping them.

Dude! I’m sorry you get headaches, or that your knees hurt when you first stand up or run too far, or that you feel pain when you work in the same position for too long, but it is not even remotely the same as not even being able to remember what not-pain feels like. It’s not the same as having to stop and relocate your toes a few times a day, or having to jam your shoulders or ribs back in joint, or having to wear a back brace because your vertebrae keep sliding out of place (which fucking hurts, by the way). It’s not the same as holding someone’s hand and it feeling like acid on your skin. It’s not the same as waking up in the morning and feeling like you’ve been hit by a truck while hungover, every single morning, regardless of what you did the day before. It’s not the same, and it’s really rude and hurtful to pretend that they are equal.

I’m so, so sorry you have discomfort too. I do know how bad being in pain, short- or long-term, is. I wish you didn’t have to experience that at all. But please, please… it’s so demeaning to pretend it’s all the same, that because of your experience you can fully understand my pain. Please, stop. Just stop.

The same goes for mental health struggles. Ah, you were really depressed after your friend/parent/sibling passed away. That’s a normal, healthy emotional response. But it doesn’t mean you really understand what someone who lives with major depressive disorder feels like. Feeling empty and hopeless because someone was taken from you is normal. And with time the pain fades and life goes on. But waking up on a beautiful day to a job you love, a family that fulfills you, whatever, and feeling such heavy guilt, and shame, hopelessness and emptiness that you can look all the good things in the world in the face and wonder if it would be better for everyone if you were dead is not the same thing as situational depression.

And while this comes in waves, good days and bad days, good months and bad months, it’s often a lifelong affliction. No matter how good or bad things are, it’s there, lurking. Telling you how hopeless and unlovable you are, and how you’re a burden to everyone you care for. How you’re hurting them by just being here. So just leave. Run away. Die.

Unless you have experienced this chronic, non-situational disorder, you can sort of have a modicum of empathy, but not really. Not fully. And it’s insulting and hurtful to those who live with this disorder to pretend you do.

Same for pretty much all things. When you arrange your pens on your desk in a certain order, stop saying how “OCD” you are. You do not have a compulsive disorder that controls your life. You have perfectionistic or strongly organizational tendencies. Please don’t laughingly say how bipolar you are because you changed your mind or feelings about an issue. No, feeling stressed about an important meeting or getting your house ready for family visiting over the holidays is not the same as living with an anxiety disorder. Please don’t call yourself “so ADD” because you got distracted by a distracting situation, or forgot something. And please stop telling me that you get headaches sometimes and that’s the same as my chronic migraine disorder. And if someone tells you about the weirdness that comes along with their dyslexia (or any other disorder/disability/condition), please don’t join in with “oh yeah, reading is hard for me, I just don’t have the patience for it. I probably have dyslexia, too! Haha!” No, you probably don’t. But thanks for making light of a lifelong struggle that has, on multiple occasions, nearly derailed everything for me. This is not only really insensitive to people (including, but certainly not limited to, yours truly) who actually struggle with these disorders, imbalances or diseases but it is also completely ableist, demeaning to people with disabilities as a whole, making light of a situation(s) that is very serious to many people, and can in some cases hinder the progression of research or treatment for a condition.

(This is also a good place to note that it is inexcusable to ever suggest someone shouldn’t get help/treatment for their condition, whether that’s seeing a therapist, taking medications or doing some “weird” treatment. It is 100 percent unacceptable to suggest you don’t believe in a disorder, or that someone is faking it. And, this one’s for your doctor and holistic therapist friends, unless someone specifically asks you for your opinions about their health care, please do not volunteer treatment, cures or therapies. We may experience various forms of disabilities, but we can Google. We have medical professionals to talk to. Some of us even went/are going to med school. And we can reach out to people and ask for their opinions and advice if we want it.)

So, boiling it all down, please be mindful. Please be kind. You can have sympathy, compassion, love for someone without having to feign empathy. I know when you say, “ah yeah, I totally understand, I’ve got/experience/feel the exact same thing…” you are trying to connect, to relate, to share how much you care, but that message is getting seriously lost in translation. Consider, instead, “Man, I can’t imagine what you’re going through,” or “You know, I had this pain after my surgery that, I swear, was worse than the injury itself! It was insufferable, but thankfully everything healed up well and I don’t have to live with that anymore. While I know that’s not the same as what you’re dealing with, it does give me a tiny glimmer of insight into what you’re dealing with, and man… I’m really sorry” or (a personal favorite) just “That sucks, mate. I’m sorry.”

We want to connect with people so badly. It’s good, it’s natural. Human connection is important – vital, even. But please just bear in mind that even when you have the best intentions, you can still hurt people. You can be exhibiting ableist behavior and language that is detrimental to an entire demographic. This is not a “we can’t say anything anymore without offending someone” situation. This is just a call to please be mindful that, as you are trying to be kind, as you are trying to share a moment with someone, that you aren’t making it all about yourself, or negating their experience, or minimizing others’ feelings. It’s not hard, but it takes practice. You can have sympathy without having empathy. It is physically impossible for someone to empathize with every situation, so don’t worry about it. Just be kind, listen well to others and don’t make everything about yourself.

Like I said, this is a learning curve, and we’re all on it. No one has arrived. But awareness is the first step. Whether you like what I have said or not, if you’ve made it to this point you will be walking away from this post with more information and a different perspective than you started with. Just think about it. Consider it. Use it as a filter to apply to situations. See how it feels, how it applies to your life. Before you jump into a conversation with “oh my god, I know exactly how you feel,” just pause and check in with yourself.

Is your situation actually the same?

Did you let them finish their sentence before you jumped in?

Are you letting their feelings be heard?

Are you, intentionally or otherwise, minimizing their experience by throwing yours on top?

Are you sharing this because you want them to know they’re not alone or are you just making this about you?

Is it more important, in this moment, that your friend/loved one feel like you heard them and respect their experience, their struggle, or is it more important that you are heard and are a part of the narrative?

Might you be looking for the words “I’m sorry you have to deal with that. I love you, and I’m here for you” instead?

I can’t answer these for you. Only you can. But please stop, look and listen before you try and cross the empathy street.

This post originally appeared on Work Shark.

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Photo via berdsigns on Getty Images

Originally published: January 8, 2018
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