Understand That You Can Never Understand

Athena ScalziIf you live with a disability, I’m sure you’re familiar with how difficult it can be to explain your disability to others. Whether it be a doctor, a friend, or a family member, trying to get them to understand how it feels to have your disability can be rather challenging. Trying to make someone understand your disability goes beyond explaining symptoms, it’s more like you’re trying to explain the effect these symptoms have on you, and how they can take a toll on your physical and/or mental health.

If you know someone who has a disability, I’m sure you’re familiar with the feeling of confusion, the lack of understanding of what exactly their issue is. And no matter how many times they try to explain it to you, there’s still a part of you that just doesn’t get it.

You have to make peace with the fact that you will never fully understand a person’s disability. No matter how much you listen and learn, you will never know how it feels to be them, to have their disability. You can know the symptoms by heart, but you’ll never be able to know first-hand how it feels to experience those symptoms.

I know it can be frustrating to not understand, to not grasp why a person is affected the way they are by their disability, but you just have to be as understanding as possible, and accept you’ll never truly know what it feels like.

For example, I have narcolepsy (with cataplexy). As you may or may not know, narcolepsy is a neurological disorder where the affected person gets tired very suddenly, and has sleep attacks where it’s almost impossible to not fall asleep. So people assume it just means I get sleepy or I’m tired all the time. But the tiredness I feel when my narcolepsy hits me out of nowhere is a completely different type of tired that feels incredibly difficult to explain. It’s something more than sleepy, it’s more than just a standard “tired” feeling. As much as I can try to sit here and explain it to you, the simple fact is that you’ll never really get it.

This is especially true for cataplexy, a side effect of narcolepsy that makes me lose complete muscle control when I laugh too hard. If I laugh too much I’ll literally collapse onto the floor like a ragdoll and just lay there, not moving or breathing. But I’m still totally conscious! Though you really can’t tell since my eyes shut because I lack the capability of keeping them open while enduring a cataplexy attack. When I ragdoll, though, my nerves actually become hypersensitive so anything I feel physically is amplified. And I truly cannot explain how that feels. It’s so different from anything I’ve ever experienced.

Before I developed narcolepsy with cataplexy, I never knew these feelings that I feel all the time now were even possible. To be fair, I developed it around twelve or thirteen, so I’ve been this way for a while. And you’ll never really understand how living with this disability, one that makes me fucking sleepy, has greatly impacted my life. It’s not just an annoyance, it’s not just frustrating, it’s not just maddening. I genuinely fear it sometimes. What if I fall asleep somewhere I’m not supposed to, or if I cataplex on the edge of a cliff? And yes, I use cataplex as a verb, I don’t really know if it’s right but it’s my brain disorder and I can do what I like.

The point is, everyone has things that they simply can’t explain, and even when they do their best to, it doesn’t mean you’ll really know what it feels like for them. Even if you have a disability, it doesn’t mean you understand other disabilities. Like, if I have depression, it doesn’t automatically mean I can understand how a person with anxiety feels. Just because we both have brain issues doesn’t mean I get theirs at all! Like I don’t understand how some people with social anxiety can’t order at the drive-thru or ask for help finding something in a store? Similarly, someone could look at me and be like “I don’t understand why she can’t just get out of bed and do the things she has to do”. The answer is, I’m not really sure. Just like how some socially anxious people who can’t make phone calls usually don’t really know why they can’t, either.

Anyways, enough about me. What I’m trying to say is that you should do your best to be understanding of those who have problems different from your own. And if you ever find yourself not really getting someone’s issues, you should consider yourself lucky. Be patient. Be understanding. And be kind.

And as always, have a great day.

-AMS

66 Comments on “Understand That You Can Never Understand”

  1. May I use this essay, possibly, as an assignment in my Human Diversity class? I teach a module on disabilities, and this is a good piece on invisible disabilities, and what having a disability is like. I am mobility impaired, & I talk about that, but it is good to have other voices. I would, of course, give you full credit.

  2. A very powerful and well said piece. As a person with his own chronic disabilities, I am hear to listen if needed

  3. Interesting. As you probably know, Theresa Neilsen Hayden has a similar syndrome. But yes, part of the issue of being disabled is dealing with well-meaning people.

  4. Thank you, Athena. You are a very brave woman. The stigma is real. I don’t hide that I have major depression and anxiety disorder. Or chronic pain. I can’t anymore. The effort is too draining.
    I once knew a narcoleptic man and saw for myself how our affected him and his family. I can’t understand, but I can…sympathize. I’m willing to offer an ear if you need one.
    Once again, thank you for your willingness to come forward.

  5. I have hearing difficulties, not totally deaf, but often have trouble understanding what’s being said.
    It’s very frustrating when my problems are dismissed with the phrase, “He hears what he wants to hear.”

  6. You have my sympathy. I also have a “hidden” disability which can cause all sorts of problems.

    And I swear, if I hear just one more person say “Why don’t you just…” as if I hadn’t already tried everything to fix it, there might be blood on the walls.

  7. Very well said! I think it’s also very difficult to really internalise what disability discrimination and prejudice feels like if you haven’t been there. Trying to explain to someone without a visible/perceptible disability that actually it’s very much not ok to come up and pray over me is, shall we say, not always successful. Some nondisabled people immediately get it, but the sheer numbers of “they mean well” and “oh, you’re overreacting” are dispiriting at times.

  8. I love this. Thank you, as someone with social anxiety and a neurodiversity. I appreciate your willingness to talk about your own disability even while knowing we won’t truly understand.

  9. Thanks for writing this, Athena.

    So much this.

    The nature of 1 (one) of my disabilities is such that people will often defer to the sighted people I’m with.

    Time and time again I’ve had to slap bank tellers’, nurses’, cashiers’, servers’ and party guests’ hands with the “you can speak directly to me, sir/ma’am” reality check.

    I’m shorter than I should be; that plus my babyface equals ableist down-talk.

    It’s difficult to explain what I mean but, I liken it to the way strangers speak to children, the elderly and the intellectually disabled.

    Well-meaning people will often ask me what I like to do in my spare time, like you might if you were trying to make polite conversation with someone’s kid.

    The assumption is that, as a disabled person, I’m under round-the-clock supervision and spend my time on volunteer work or at adult day camp.

    When they find out I graduated at the top of my class and have publications, conference presentations, teaching experience (professor of record at a CSU), socio-academic leadership roles, extracurricular activities and guest-lectures under my cane holster, the response is always a tossup between shock and “humoring” gestures/mutters.

    Mostly, people feel as clown-shoe as I intend them to and begin speaking to me like they would any other adult.

    It’s happened often enough that being gracious about it gets more and more difficult.

    I don’t want to “inspire” people or remind them how lucky they are to be able-bodied.

    I get tired of “amazing” people with my ability to present an effective course of study in a real-life classroom with real live students and everything!”

    I think you’re right when you call upon us to remember that some things defy explanation and require patience and empathy to be even marginally understood.

  10. @Sarah Marie

    One of the things I’ve learned over the nearly 17 years I’ve been a t1 diabetic single mom to a kid who is visibly disabled is the enormous difference it makes to be able to “pass.” Yeah, I deal with stigma and discrimination, sure; but it’s on a whole other level. Like you, my kid is very short. The shock at how people feel free to treat them because of this has worn down over the years but it never stops making me furious.

    During the first lockdowns in the spring when everyone was getting out for their daily walks and trying to display the spirit of covid-comaraderie and togetherness, every single day during every single walk, someone would stop us to congratulate my kid for getting outside and walking. That these strangers meant well was obvious but didn’t change the ableism.

    Anyway. I join you in your fed-up-ness and deep desire for social change on this front.

  11. Wow. Thanks for sharing this. How can you drive, then? What if you fall asleep at the wheel? Do you have any warning an attack is coming?

    I noticed this particularly around the time my wife was having her knee replacement surgery. Pushing her (or following the aide pushing her) through the airport in a wheelchair, you get a whole different perspective on how people look at you if you have a disability or or physical issue.

    Best of luck with it.

  12. Thanks for posting this Athena. Empathy is an under-utilized skill I think but it can be developed if a person wants to. And it can help with interpersonal relationships but also in wider encounters like between warring groups and nations. I’ll keep working on my own empathic skills; maybe it will help me feel less stressed when encountering “covidiots” who insist on squeezing past me in grocery store aisles!

  13. Thanks, Andrea.

    Hugs and warm wishes to you and your child.

    Diabetes runs in my family and I’ve watched my mother, grandmother and aunt struggle with it all my life.

    The appallingly, inexcusably ignorant “why don’t they just cut out the cookies and cakes?” and “that’s not a disability, it’s a consequence for poor dietary choices” remarks from uninformed jerks make me want to break things.

    Back when I had vision, the “Oh, God, one of *those* customers” eye-rolls from waitstaff used to save me a mint in tip money.

    I wish you luck in managing your condition and hope you and your child are keeping safe in the midst of this madness.

    I hope they continue to thrive, even in this climate.

    Me, I’m going to continue sounding off in the faint hope that the national consciousness (Ha haha. Aaaa Bahahaha!) will shift more toward acceptance of and education about disabled communities.

  14. I’m in awe of your level headed,”This is what I live with, and even I don’t have it fully understand, but here I am” attitude.
    It is hard, I would imagine to put up with the “You should ,,,”
    How many well-meaning folks have pushed their favorite vitamin or supplement on you as if you and your medical crew are incompetent nitwits?

    You have your own path, but if you ever feel called in the advocacy direction, you would be damn effective.

  15. Thank you for sharing this excellent post.

    It’s come at a very timely moment for myself, struggling with my own issues.

  16. More generally you can never know how it feels to *be* someone else, but empathy requires you to understand that and still try. Furthermore don’t assume you know what another person needs if you think they are having a problem, ask them. “Do unto others as you would have them do unto you” is a good start, but if you don’t understand what it means to be them, then you can’t understand what you would want if you were them…. But you do know that you would like to be asked.

    Other people are *other* *people*. I dunno, I’m 50+ years old with ADHD, depression and anxiety and I’m still learning this stuff.

  17. @Sarah Marie: Thank you! I hope you’re doing well and coping through all of this too.

    Yeah, I know how you feel. It all feels very futile sometimes (or a lot of the time). I work on climate change projects and really fear that I’ll have spent my adult life and career building a green society that, when we get there, won’t let my kid in — will have forgotten to build the accessibility ramp or assumed that everyone could walk/ride their bike to the bus stop or assumed that elevators were conveniences etc.

  18. Thanks for sharing this. It’s really important.

    I was oblivious my own ableism with regard to invisible disabilities until my wife’s multiple sclerosis diagnosis several years ago. Seeing other people not understand what she was going through — especially how the fatigue that resulted from her brain damage both did and did not affect her ability to accomplish things — brought home how much I didn’t understand about so many people in my life. The most painful thing was watching people try to decide which category she fell into: sick and helpless, or ‘normal.’ The complexities of the situation were just too much effort, and I could actually watch people get frustrated with having to think about it. Before I saw people do that to her, I had no idea I was doing it to others.

    After some years of this, it seems to me that being compassionate has less to do with understanding what someone else is going through, than with being OK with the fact that I probably don’t understand, and taking that as my starting point.

  19. I have medical problems. Disability? That can be argued about, but I have had a few scary moments, and they will never get better. Too many people who take decisions keep asking me for some sort of official confirmation, far more than just checking I am still alive.

    I think there are some power games behind some of this.

  20. That’s really awesome of you to share this with us. I opened up about my struggles with anxiety and OCD, and was shocked how many of my friends suffered as well from various mental illnesses and I never knew and inspired them to be more open as well. It’s really therapeutic to talk with others in similar situations. Good on you, AS. Cheers!

  21. Thank you so much for sharing this. I so appreciate you sharing this with us. You are right about “understand that you will never understand”! When I was younger, I wouldn’t have understood the disabilities I deal with now.

    One thing I’ve found powerful about the internet is that it’s enabled me to find other dealing with similar disabilities who DO understand. It is so wonderful to have friends (many of whom I’ll likely never meet in person) who can truly appreciate and commiserate with my ups and downs and frustrations.

  22. It seems that most people I know have one or more disabilities. I, myself, have at least 4:
    ADHD (which I learned to deal with by the time I was 13).
    No central vision in one eye (playground disagreement when I was 11).
    Partly deaf in one ear (getting older beats the alternative).
    “On the spectrum” as they say. Not extremely disabling, but can’t really form strong relationships.
    Plus alcoholic. Clean and sober in AA for 1/4th of a century. (Disability? I suppose? Certainly treatable.)

  23. Thank you. Yes. This is both helpful and a good reminder.

    As a teacher, I’ve had many students with “hidden” disabilities in my classes over the years–the ones that come to mind most immediately are epilepsy, diabetes, severe asthma, and various learning disabilities. Sometimes it’s a “documented disability,” and the university tells me about what the student is going through, with the student’s understanding and permission. Sometimes it isn’t, and the student just approaches me privately with information they feel I should have. (I’ve also had students who have been made to feel so bitterly ashamed that they hide their condition, and that is never a good thing for anyone concerned.) Rule number one: never say any variant of “Why don’t you . . .” or even “Have you tried.” The best thing to say, depending on the situation is: “Can I help?” or maybe, “How can I help?” or “What should I do to help?” Sometimes the answer is “Nothing.” Sometimes there are specific actions I can take, or a plan I can make in case my assistance is needed or will be useful.

    The point I’m trying to make is, once I’ve asked the question, it’s over to the students to decided what they want from me, and then it’s my responsibility to do it–whatever that might be. It’s a lesson I’ve had to repeat to myself many times, and that’s why I appreciate you reminding me.

  24. Would have to bet this article took quite a while to get the way you wanted it. Job well done!

    Being an old I have developed some of my own disabilities. Time can do that.

    Sorry to hear that you have the disabilities you speak of so eloquently, and thank you for sharing your viewpoints to educate folks. Take care!

  25. Regarding accessibility, I have lived for decades in one of the most progressive cities in North America, Calgary. I am delighted at the changes I have lived through. My impression is that we have gone from meeting only the building code minimum, “letter of the law,” to having a “spirit of the law,” in that the general public is far more progressive now. And I guess the building codes have improved.

    It’s queer: Just as the nonhandicapped, with no health need for early voting, have started doing so, they now happily “buy in” to using access features such as special doors at the mall, ramps, tables, curb cuts for their strollers (prams) and so forth. There is no longer a novelty at seeing braille in an elevator, or having a voice or a beep at each floor.

    One of the things my city does is have persons with disabilities in regular schools, which takes away a lot of the “strangeness factor” for the kids.

    I was delighted, and humbled, to go to a suburb of London England (Woking, where the Martians landed) and see old mossy curb cuts, broad with raised yellow dots, that were obviously there before we started doing so in my town. We used to only have shallow cuts, no dots.

  26. So true.

    For myself, my primary disability is respiratory. Allergies and asthma. Here’s a thing with doctors: if you’re not showing symptoms of asthma at the moment you’re in their office, they don’t believe you have it.

    I’d been going to the same doc 2-3 years, and one day I went in and happened to be symptomatic. “You have asthma!” She sounded surprised.

    “Um, since I was 5.” (I’m 65, now.)

    People who are smoking get upset when I won’t talk to them or walk away from them. I can’t visit my friends at home if they own cats. Strong perfume can cause wheezing and shortness of breath.

    Enough about me. Thank you for speaking out.

  27. When I was in high school I got hurt playing football.
    My right shoulder was separated and they took parts out of my leg to rebuild the shoulder.

    The right arm was taped to my body, I couldn’t use it at all.
    My leg had started bleeding
    and I ended up with a ankle to hip cast.

    For six months everywhere I went people would stare at me!! I hated being stared at,
    and developed a “what the hell are you looking at asshole” attitude that remains to this day.

    Later in life I was involved in the grounding of two submarines on Hawaii. The first time we were submerged at 250 feet when we hit the island doing 10 knots. That was the day we died.

    A year or so latter after being submerged for 74 days we ran aground just outside Pearl Harbor on Christmas Eve 1967.
    doing 18 knots. We were so high and dry seagulls were nesting under us at high tide.
    And without cooling for the reactor we melted down and died on the way to the center of the earth.

    The being dead part is WHAT should have happened BUT Cod loves sailors, dtunks, and fools and I survived but was never the same again.

    It took 42 years before I finally got help found out I suffer from PTSD and am antisocial and passively aggressive.

    Now with the help of some serious. Medications I am able to live an almost normal life
    Depression and worrying about every damn thing are still not completely under control.

    When people don’t see you bleeding or with broken bones sticking out they assume you are all right. They say the stupidest things like “this is the result of the choices you made” or “all you have to do …”

    At 74 I look back and am amazed that I was able to survive for so long without medical help and know for a fact that the mental and emotional injuries that the other people can’t see are the ones that do the most damage!!!

  28. Just wondering, have you ever read “Serious Moonlight” by Jenn Bennett? The heroine has narcolepsy and cataplexy as well.

  29. Thank you so much, Athena, for putting this into words. I recently had to step away from a friendship. After years knowing each other I thought he got it, got that there are hobbies he enjoys that i will never be able to join him in. When he casually suggested i join him I was surprised and disappointed . When I explained (again) why I couldn’t the conversation devolved into a series of “Have you tried xyz?” and “But are you really trying hard enough.” I don’t need that in my life.

  30. I’d add, too, that knowing what a specific disability or impairment is like for me doesn’t necessarily mean I know what it’s like for someone else, or even will be like for me later in life. What depression meant to my teenaged self was very different from what it means to my middle-aged self. Who knows what it will mean when I’m 90?

    Of course, I’ve a much better chance of guessing what depression might be for someone else than what narcolepsy is like for you – if you like, I don’t know the weather in a town 20 miles away, but I do know the climate, whereas I have no experience at all of the climate in Arizona or Vladivostok. There are extremely likely to be aspects of impairment and experiences of social-model disability in common: one can make educated guesses about what the same-named condition is like for other people and (often) find great community in shared experience. But sometimes discover that the same name makes for startlingly different experience, too. How people navigate that can be extremely interesting.

    One can derive a lot of understanding of what it’s like to experience adversity or ‘difference’, and others’ reactions to those things, which generalises very well to better understanding what adversity or difference might be like for others – per your article, recognising that “why can’t you?” and “why can’t I?” are aspects of very different experiences, or that some people will actively insist on your making yourself comprehensible to them, before they’re willing to accept that you simply are as you are. That seems to generalise across a lot of types of experience.

  31. I’m pretty sure I have cataplexy. When it happens It feels like I’m a marionette and my strings have just been cut!

  32. Well said, thank you, Athena. It feels nice to be understood for this frustrating, sometimes goofy disorder. If it is any comfort, I have made it to age 45 without cataplexing off a cliff, or anything comparably plummety (and have learned to be hard to impress when it comes to humor triggers 😁)

  33. I have progressive hearing loss thanks to bad genetics. Hearing aids are, as inherent in the term, aids, not magic bullets. A cochlear implant is in my near future, barring other advances in auditory science. But in the meantime it would be really helpful if, once I mention that I’m hearing-impaired and require a speaker to look straight at me and be sure to enunciate, not to need to issue (m)any reminders. And don’t even get me started on how reluctant I am to converse with people when we’re all wearing masks and lip-reading becomes an impossibility. This is one of many reasons I hope COVID is vanquished sooner rather than later.

  34. I’m epileptic (I have complex partials, not the tonic-clonics – what used to be called grand mals – that people tend to think of when they hear the word “seizure”) and my seizures are more or less under control at the moment, but sometimes my brain does weird things anyway. And when I try to describe the way my brain feels (or, for example, the inside of my head, or my blood vessels) to my mom, who is not epileptic, sometimes I end up giving up and quoting The Voyage Home instead. “You mean I have to die to discuss your insights on death?!”

    Well said, Athena.

  35. Excellent post. And any comment that starts “Why don’t you just…” makes me want to lay about with my trusty broadsword (note to self: see if Amazon carries trusty broadswords). I’ve been disabled since childhood, in public school in the 50’s: constantly stared at and totally ignored. One side of my face is partially paralyzed which makes my facial expressions pretty strange (not as much a problem in my 70’s as it was when I was 5…)

    Also, forgive me but I had a brief fantasy where a cataleptic was someone who shoplifts cats. Aargh.

  36. My closest friend has severe narcolepsy. So bad that she’s on Disability, just to get her meds. They’re a Class One narcotic that they give to soldiers in war zones. They take one, they’re awake for 48 hours. She takes one, and she’s awake for 8 hours.
    Her husband changed jobs a month ago, which meant her insurance changed, which meant that her meds were withheld for a week. CVS “helpfully” suggested she pay out of pocket. The pills cost $250 a day. She spent a “week from Hell” before they approved them again.
    A thing that drives her crazy is “But you don’t LOOK sick!” There’s an article on Cracked–yes, the humor site–that I sent her, and she sent to 5 people immediately. It gives a good overview.
    https://www.cracked.com/personal-experiences-1956-ive-got-narcolepsy-6-things-everyone-gets-wrong-about-it.html

    Another good one about hidden disabilities is The Spoon Theory. Yes, the url is:
    https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Best of hopes for you. It can be handled, always keep that in mind.

  37. The title of your post, Athena, sums it up very well. And I think I’ve been letting my mostly-abled self slip on the recognition of never understanding, so the reminder is worthwhile. Thanks!

    I’ve often thought that education should include a form of “practicing disability,” if that’s not a disrespectful concept. I was in my 30s when a friend with MS asked me to deliver her ability scooter to a place several blocks away. The only way to deliver it was to ride/drive it. I encountered numerous people who smiled at me in a way no one usually smiles at me. I saw myself in their eyes, and I was about 8 years old. It was ghastly, even though I wasn’t experiencing the other aspects of her MS. And I had the privilege of knowing it was very temporary! The experience certainly increased my empathy around the others’-behavior-part of disability.

    Today, at 65, I have several friends with invisible disabilities. They deal with a different set of others’ behavior but, man, it’s awful, too. I’d probably become known as very cranky, even shouty.

    Nancy

  38. ADD, PTSD, hyperacute hearing, and a soul-allergy to certain shapes, plus I’m fat. You wouldn’t believe the crap I get from certain family members about the fat. Thank goodness for Health at Every Size and the rest of the fat acceptance community. I have been fortunate in seeing a lot of doctors mend their ways about this in the last few years, in Cascadia at least.
    I have also had some people say they think I belong on some sort of “autistic spectrum” because I am an introvert with unusual interests. They are slowly learning not to do that, as well as to shut up about my weight. It does not really describe me, and I have at times said I have my own @#$%&! spectrum. Diagnosing a well-adjusted adult against their will is at worst deadly, at best just plain rude. No one can tell my story for me. If they really think I am as “bright” as they like to tell me, they can quit treating me like a (your choice of epithet for stupidity). And does anyone else notice how “bright” is so bloody vague?
    Good post, and good comments.

  39. Heck yes, Athena. It’s easy to get caught up in one’s own battles and to forget that others might be going through similar, or worse, battles of their own.

    Now & then someone I know will have a big vent on social media about a particular problem they’re having. The reactions are always interesting. There’s sympathy, there’s judgement (“You drink sugary soft drinks and you smoke; what did you expect? What does your doctor say?”), and inevitably there’s “Oh hey, have you tried [insert name of quack remedy here]?”

    I too have a number of invisible disabilities, and this presents a challenge. Share, and risk being seen as a chronic complainer with a bad attitude? Or maintain the old stiff upper lip?

    If I’m at the point of talking about it, it’s usually because I’m out of patience and down to my last frayed nerve ending. Far better to find an excuse to leave a gathering early, with a smile still on my face, than to be all, “I love you people dearly, but if I have to sit here and be social for one minute longer!! I’ll need to go into seclusion with the cats for the rest of the week.” Feelings are so easily bruised. :D

  40. Yes, the Cracked guys are smart, too smart for a commenter who complained when one of them used proper English by saying “…an historical…” Our culture likes our entertainers to be stupid, as a false comfort.

    I once linked here, after the 2016 election, to Cracked David Wong’s insightful article on why Trump got in… as city slickers comforted themselves by saying rural people are stupider than us.

  41. Thank you for sharing your story and your frustrations. With regards to your closing, I would only add “believe people”.

    Living with a disability is challenging. Living with a lifetime of one with varying severity (depending on the day, the season, the weather, or just luck) can be brutal, especially when the people you interact with try to tell *you* what’s wrong with you and how it’s not really that thing you actually have. No one should have to deal with that.

    Again, thank you.

  42. What a lovely essay.

    As a disabled person, the one thing I always appreciate somebody’s saying is ,”Wow, that must suck” or “I hate that you have to deal with this.” I try to say it a lot myself. It doesn’t claim knowledge of the situation, it empathizes.

  43. Thank you for writing this, and thank you for sharing. It must have taken guts to be so open and honest about something so personal.

  44. That is so true! And sometimes even within a disability it can be easy to assume you know how someone else experiences it when comorbidities, where a person is on a spectrum, wealth, demographics and status can all shape a person’s experience of disability (or even ability to get diagnosed like ADHD or Autism for women).

  45. Thank you for sharing. The emotional honesty reminds me of your dad’s essay about being poor. I haven’t experienced poverty or disability myself (yet)… and I’m glad that writing like this provokes my empathy, makes me reassess my own actions… what am I doing to create an equitable society? Do I treat others with respect (not patronizing or infantilizing) while also asking “do I need to change up anything for you?”

  46. The nice thing about having your own blog is that, unlike a paid journalist, you can write your own headlines.

    When people are, like you say, “well meaning” I wonder how much of their wanting to believe they understand is from a default of having an “I know” ego. I try to challenge my various defaults. As a teen who read books I endured peers who all “knew” that conformity was right; as an adult I am around people who believe in racism, ableism or social media. I don’t want to be bitter like Mark Twain became from him knowing that Huck Finn was right and everybody else was wrong.

    A classmate joked about getting a T-shirt that read, “But I’m not bitter.” The story of my life is allowing myself to have justified bouts of anger, while also finding reasons to feel charitable towards people. I’m sure others do the same. For example, a teenager who’s parents were killed by Christian humans manages go to a public Roswell carol singing because he decides to believe in his human girlfriend. A mother who’s instinctive default is to ask her daughter Buffy, “Have you ever tried not being a slayer?” is able to come around after she has time to think.

    My default might have once been to say, “I understand” but, if so, that has not been the case for decades.

  47. @Dan I’ve always considred that my being hard of hearing was not a “real” disability. thanks for pointing out that it is.

  48. neurodiversity is so beautiful and so confusing.
    thank you for your words.
    i understand that i can’t understand you and you can’t understand me & yet there’s crossover of the emotions we have that we can’t explain. or how completely messed up it is to have your body fail you at random creating a constant level of uncertainty and yet…

    we are at a pivot point right now & the opportunities for a new system of collaboration & an occupation & a better quality of life for the differently abeled is upon us.
    we need better ways of connectivity throughout all the differently abled.
    we can build the bridges.

    as much as i can never understand another’s perceptual reality, i think that it’s important to try to talk about it. some of the most interesting conversations i have ever had have been a very basic, this is what i experience sitting in a room at home or walking down a city street.

    ps: i have found that it is such an inexplicable experience having an epic first name.

  49. Last night I was shocked watching a UK doc about a school. Some pupils were preparing to put themselves forward for head boy/girl, one of whom was a girl whose reaction to laughter is extreme incontinence. She lives in fear of laughter, and by fear, I mean social terror and panic. But her courage was astonishing. Being one of life’s Chandlers (a Friends reference), I found it impossible to conceive of anyone not having recourse to laughter for psychosomatic reasons, and yes, “shocked disbelief” is probably an accurate description of my reaction. I can and definitely do sympathise, but just as you say, I don’t think I can ever empathise in the sense of knowing or feeling what that would be like, to me life without laughter is simply unimaginable. Thank you for the insights you are providing in these articles, which can be informative in such unexpected ways.

  50. Dealing with people who seem to believe “Not like me = stupid” can be quite unpleasant, hearing loss & tinnitus alienating, but I mostly work around and manage. I hope you manage as well.

  51. Athena,

    I think you have done a remarkable job in explaining that which you cannot explain.

    I have worked as an Occupational Therapist for 40 years, and have evaluated and treated, literally, thousands of people with various physical and neurological disabilities. That process is one of attempting to find out what is going on, what the person is experiencing, and determining how to either treat the disorder or to compensate for it so that the person can get on with their life.

    In spite of this experience, only recently figured out that most people with disabilities cannot explain what they are experiencing, what their disability is (beyond the broad definition: I had a stroke, or I broke my leg.)

    It is from this background that I say that you have done a remarkable job of describing your experience, and stating that you can’t explain in more detail.

    The person who brought home to me the failure of communication was a young college student with a cochlear implant. She was able to converse with, and understand, standard midwestern English, so long as she could see the face of the speaker. However, because of the way the implants work, she was not able to understand strongly accented speech. One of the professors in her major was from India, and still had a strong East Indian accent, that made him very hard for her to understand.

    The faculty within her major suggested a number of accommodations. To these, she could only say, “That won’t work. We’ve tried it.” She was not able to explain *why* it would not work, or suggest things that might work. I was called in to try to identify solutions and explain to the faculty why their suggestions didn’t work. This required talking, and *listening” to the student, then doing outside research to affirm that this was, actually, a problem.

    I have heard many therapists assert that their patient was in “denial” about their neurologic problems, most often saying that “I never was able to do that.” It is only by observing that, in general, you remember your past experience through the same brain circuitry that recorded it in the first place, and that if, for example, your perception of the left side of the world is damaged by a stroke (we call it “left neglect”), that you can realize that the patient cannot remember ever seeing the world differently, because the memories are not able to get through the damaged parts of the brain. It isn’t denial, it is a new reality.

    As a therapist, my job was to be paranoid and a pessimist. You talk about your concerns about cataplexing on the edge of a cliff. Most of us don’t hang around on the edge of a cliff that much, but we do drive cars, and the consequences of going limp at 60 miles an hour are just as grim as falling off a cliff.

    One of the best insights I ever read about disability is this: The thing about having a disability is the amount of time you spend thinking about having a disability. Before each adventure, you have to think about how your disability might affect what you want to do. Those of us who are “temporarily able-bodied” don’t have to do that. That difference in complexity, alone, is one that most TABs can’t understand.

    I think you are a remarkable young lady. I wish you well. Always remember, disability doesn’t make anything impossible, but it makes many things very hard, and perhaps so hard that they aren’t worth the effort. That decision is a personal one, and as such, there is no wrong choice.

  52. I too have an invisible disability or two, and while both are easy to explain verbally, they still don’t make much sense to people without them. I think our culture is so pushy, so driven, that most people don’t have the time or energy to empathize or to really take in what they hear. Most encounters are brief, temporary, and quick-fix idea shows the usual level of our involvement with each other. as Americans, we’re supposed to be superhuman. It was such an eye-opener to visit Sweden, where the whole place was put together on the assumption that it was OK to be merely human. Thank you for sharing and making me think.

  53. My immediate, thoughtless, reaction was, This can’t be true; we’d’ve noticed it before. I guess your dad really has been respecting your privacy. Also, yes, the annoyance of the “Why don’t you just…?” This was an excellent post.

  54. My husband has a hyperactive autoimmune condition that results in a number of symptoms, including severe migraines and seizures.

    The condition started expressing itself about twenty years ago. (We’ve been together 26 years.) It took me a long time to understand that I will never understand how he feels or the mental and emotional impact of his condition. Oh, I’ve gleaned some insights, but I will never really understand.

    Thank you for sharing this with us.

  55. My younger son has a couple of disabilities, and I’ve been trying to do what I can to better understand him and help him. He’ll never be able to express what you have in this post, but I think it does help me a little bit.

    One book that I read early on and keep returning to on this subject is “Far From the Tree: Parents, Children, and the Search For Identity”, by Andrew Solomon. He explores a number of different communities that exist around a bunch of disabilities, and the strength and support that they can provide to an individual with a disability, and concludes that in a lot of cases these communities are more helpful and supportive than an individual’s family can be, because they do understand more than the family can. We try to involve my son in these communities; he’s still young, so he doesn’t completely identify or understand why we’re doing it yet, but he’s at an age where his disabilities are becoming more obvious and isolating to his peers, which has been rough for him. It might be worth checking out a narcolepsy/cataplexy support group, if you haven’t already.

    (As an aside, for about 5 years I was responsible for the manufacture of the active ingredient in Xyrem; not sure if you’ve ever tried that or not, but it would be an interesting “small world” kind of thing if you have)

  56. Athena, thank you for sharing this with us. It’s a well-written gentle reminder that even though we can never truly understand, it’s still important to try.Empathy matters.