3 Things Not To Do When Someone Discloses Their Invisible Disability
As a person with two invisible disabilities (you could just as easily say chronic invisible illnesses or conditions… I will use the terms interchangeably), I have had many experiences telling people for the first time about the conditions I live with.
At first, they were all people I had known for years, people close enough to me that I felt I could trust them not to judge me. Because disclosing an invisible illness can be an incredibly exposing experience. Many of us have been invalidated since our illnesses began — we have been told we are lazy, failures, do-nothings, that our conditions are fake, in our heads, or under our control.
We have been told these things so many times that, commonly, we have internalized this invalidation. It is a near-constant internal struggle to accept the “realness” of our illnesses, their chronic nature, and, especially, to come to a determination of the extent that they limit us. An invisible illness is invisible, at least somewhat, even to us… it’s nearly impossible to ever truly know its scope.
If the response we get is disbelief or flippancy or straight-up invalidation when disclosing our illness to someone we have trusted enough to tell, it is easy to regress back into that struggle.
So it can be a very vulnerable position to be in.
When disclosing my illness to people, I have had a few experiences of overt invalidation. But far more often, I get more subtle invalidations (you could call them micro-invalidations), ones that I am near certain the person does not know they are committing.
This is because ableism is a concept we as a culture are only beginning to wrap our minds around, and one that conflicts with other values we hold dear — like meritocracy and positivism. Many people, if they have not had to live (yet) with a disability or chronic condition, have not investigated their biases and prejudices concerning ability.
So that is why I am writing this list. For well-meaning people who are not aware what a person with an invisible disability hears when they say certain things. These responses can be hurtful, invalidating, or, at the very least, incredibly annoying to go through for the umpteenth time.
[ Real quick: if you have said these things to someone (or me) before, I want to be sure to say: do not feel bad! I always can tell when a person is well-meaning, simply not aware yet — and I’d guess that most other disabled folks can tell, too. ]
1. Don’t try and fix it: “Have you Tried Yoga?”
“Have you tried . . .” is by far the most common rejoinder I get after I disclose my illness. Yoga, for a series of reasons I shouldn’t get into here, is the most common suggestion that fills that blank. It is so ubiquitous that the phrase is batted around amongst the chronically ill as a kind of joke. “Have you tried yoga?” is right there in the top left corner in my favorite “Ableist Bingo” game.
But any form of “Have you tried…” can be hurtful. It creates what I call the “solution checklist.”
There is a performance piece I sometimes do to try and illustrate what it is like to go through the “solution checklist”. I would take an actor — posing as an audience member — from the crowd, and twist their arm.
“You’re twisting my arm” the actor says
“Are you sure? Have you tried yoga?” I say.
“Cause my relative/sibling/friend/aquaintance thought I was twisting their arm once. They started yoga, and it really helped.”
“I tried yoga.”
“Have you tried working out?”
“Are you doing it more than 3 times a week? you have to do it a lot.”
“Have you kept up with it for over a month? it takes awhile to start working.”
“Have you tried vitamin B, ginseng, Reiki, meditation, prescription medication, spending more time with family, spending less time with family, changing jobs, moving, ending draining relationships?”
“Yes, yes, yes, yes, yes, yes, yes, yes, yes and yes.”
“Quit dairy, go vegan, quit sugar, quit chocolate, quit carbs, eat only raw foods, protein protein protein?”
“Yes. All of them.”
“You gotta keep a positive attitude, too. You keeping a positive attitude?”
“Oh… huh. Well, then… maybe I am twisting your arm. You know, I always say: it’s important to listen to your body.”
With the exception of the stand-in of “twisting-one’s-arm” for “having an invisible illness” — this is how the checklist conversation usually goes in real life.
It hurts to go through the “solution checklist” because it feels like the checklist must be completed before the illness is established as existing, before the other person even believes it’s a real thing.
In the performance, the person whose arm is being twisted must say “yes” to all the suggested solutions. They must have already tried everything the arm twister thinks of to suggest. Once a “No, I haven’t tried that” is thrown into the exchange — once something suggested hasn’t been tried — the checklist conversation stops with a gavel drop:
“Oh, you should try that, then. Maybe that would help.”
That response, even after all this time, takes the wind out of me. Just like that, the cross-examination is over — and the validity of my illness (or at least the validity of my struggling with it) — has been put on pause indefinitely.
It’s basically saying, “Go try that thing. Then we can talk.”
In my desperation for validation I have gone so far as to actually do whatever the person suggested — change diet, exercise regimen, treatment plan, lifestyle — just so that I can go back to tell them it didn’t work and we can restart the checklist and *fingers crossed* hopefully get to the end of it this time! *fingers crossed*
But I haven’t once made it to the end. Because, I’ve learned, not only do I have to do the things on the list, but I have to do them “long enough”, “hard enough”, “with positivity”, and still — after all that — I still might get that unbeatable one:
“Huh… maybe you’re just not doing it right.”
At this point in my life, when disclosing my illness, I go to a happy place during the solution checklist and just let the person suggest what they want to suggest. I tell them that their suggestion is interesting and that I’ll look into it. Whatever it takes to move on. It’s too exhausting to try and explain or contest.
Plus, the whole structure of the “solution checklist” conversation is kind of a trap — at least if you are a nice person (or want to seem like one). There are no good options. You end up having to indulge even the most ridiculous suggestions. I was once asked, “Have you tried shaking, like, just jumping up and down whenever you get tired?”
Of course I hadn’t tried that. Just like I hadn’t tried wearing frozen underwear or selling my soul to a fatigue-relieving demon. But saying “no” puts my validity on pause — saying “that wouldn’t work” leaves me and the other person at odds (clearly they think it would work or they wouldn’t have suggested it) — and saying “that is stupid and you are stupid” could be construed as offensive.
The best thing I’ve found to get around the checklist is: “It’s, like, a thing.” As in:
“Have you tried jumping up and down?”
“No, it’s a condition. It’s, like, a thing.”
That has worked on a few occasions. Very few… but it’s sometimes worth a shot.
Let’s put it like this: When a person hears about a problem, they immediately shuffle it into one of two categories — the things they could not possibly understand, and the things they could possibly fix. And unfortunately, the invisibility of a disability lends itself to people thinking the problem is of the latter category. You wouldn’t try and start a “solution checklist” to solve a person’s broken arm.
And to address the natural and well-meaning response I’m anticipating: “Well, are you saying it is never okay to make suggestions? Because I just want to help them and want them to know options.”
This one is tricky. There is a time to offer suggestions. But it is probably NOT when the condition is first disclosed to you and it is definitely NOT before you have done your own research on it. Be educated before you decide you know what might help a person. Off-the-top-of-the-head solutions seem (and almost always are) condescending.
And when I mean research, I do not mean the Web MD/Wikipedia kind. Instead, read accounts from people that live with that illness. It’s far more helpful in understanding not just the condition, but how it affects a person’s life. themighty.com is a great place to start.
Another, maybe better, approach: wait for the person to ask for help before offering any. They know their condition, and they will know if you seem like someone who could help them.
2. Don’t assume you understand it: “Oh I have something like that too, I think.”
When disclosing my illness, or when talking about my most limiting symptom — chronic fatigue — I often get: “Oh yeah, man, me too. I’m always tired.” This is usually the preamble to the “solution checklist”, but it deserves its own section.
One of the difficulties with many invisible illnesses is that they lack language to differentiate their symptoms from the spectrum of emotions/struggles that an enabled person experiences.
[ I prefer to use the terms enabled vs disabled rather than normal(able-bodied)vs disabled. Why I prefer it and what it means to say it that way can be found by reading Eli Clare’s Exile and Pride — a book I cannot recommend highly enough. ]
Everyone has been “sad”. Everyone has been “anxious”. Everyone has had what they consider “horrible pain” in unseen places. Everyone has been “fatigued”. And terms like “panic attack” and “depression” are used casually in our culture to refer to all sorts of feelings that wouldn’t be considered medical symptoms — let alone diagnoses.
So it is sometimes difficult for people who don’t have depression or anxiety disorder or chronic fatigue or a traumatic back injury to understand the difference between the experiences they’ve labeled as “depression”, “anxiety”, “exhaustion” or “chronic pain” — which they have been able to manage — and those of the person who is saying they are debilitated by them.
We all do this. Here’s an example from my life. One you’ll maybe wish I never told you about:
I was blessed with never having constipation until I was 28. I am born fortunate in many respects, but I consider this to be how I am most privileged. (I’m joking, of course)
But I did have what I considered a difficult time pooping before. “That is all it is, right?” I thought. Because that was how it was described. “What’s the big deal? Why does everyone talk about it so much? Are they just gross?”
Then the day came when my blessed bowels met the harsh, real world, and I got a glimpse of this digestive horror. And I realized, “Oh, this is constipation. This is why everyone talks about it all the time.”
And the constipation I’ve experienced since is not nearly as bad as some people’s (if you want to have nightmares, look up megacolons), but, with just a glimpse of it, I won’t ever again downplay its awfulness again if anyone ever complains about it.
And there are a lot of other — less tmi — things like this in life. Things that you can’t understand until you’ve been through them, but once you get even just a hint of them, you — hopefully — stop taking them lightly when they happen to others. Grief is like that. Prejudice is like that. If you’ve been through some form of them, you are able to understand their gravity. If not, they might not seem like a big deal.
So, even though depression is described as “being sad”, or hypersomnia is described as “being tired”… if a person is telling you about their condition and you can’t see what the big deal is — assume you are like me and pooping: blessed.
Also, it’s important to say that these rules apply even if you identify as suffering from the same condition as the one being disclosed to you.
Some of the most hurtful criticism I have received about my illness has been from people who identify as having similar or the same conditions that I do. This kind of response on their part, I think, is sometimes a denial — people not wanting to admit their own limitations to themselves — and other times simply not understanding that there is a spectrum of experience and severity inside every diagnosis.
But it is always shocking when it happens, and messes me up on a whole other level. Because they describe something (often uncannily) close to what I experience — which is rare to begin with — so I let myself be vulnerable around them. But then they begin judging certain things — aspects of the way I am handling or treating my condition, or how much limitation I “allow” myself to accept — and I feel simultaneously understood and invalidated.
So even if you have battled with anxiety disorder, for example, and can manage to work and/or raise a family with it — it does not give you the right to look down on someone who has anxiety and cannot. When a person tells you their anxiety is debilitating, believe them. Believe that what they are experiencing is different than what you deal with — either in severity or type.
Lastly, this way of comparing the person’s struggles to your own should be avoided because it can just straight-up confuse a person as to what they are experiencing.
I’ve had my hypersomnia since I was thirteen, and for many years, I assumed everyone was as tired as me. They simply dealt with it better. I was the only one who had to put my head down in every class and sleep through all my work breaks (even the 10 minute ones), but still, I thought, everyone experienced this level of exhaustion regularly. It was what the coffee commercials seemed to suggest, anyway.
So understand that when you say to a person with an invisible disability “Toughen up, work harder…” they could be hearing: “I’ve had what you have, then I toughened up and worked harder — and the condition got better.”
3. Don’t try and make it okay
We live in a culture of deeply entrenched positivism. It is considered bad, unhealthy even, to have a negative outlook, dwell on bad news, not see the “light at the end of the tunnel” or the “silver lining”. The extent to which this is true is not an argument I can outline here, but if you are interested, Bright Sided by Barbara Ehrenreich is an amazing book on the subject.
So it is hard to hear bad news and not try and put a positive spin on it. It’s almost a nervous reflex with people, I’ve found. And those of us with invisible illnesses fall into direct conflict with this outlook.
Disability expert Joni Eareckson Tada, explained the conflict for people with invisible conditions this way, “People have such high expectations of folks [with invisible disabilities], like, ‘come on, get your act together.’ But they have such low expectations of folks like me in wheelchairs, as though the thought is that we can’t do much”.
To say it in another way: While those with visible disabilities often have to prove they can do things, those with invisible disabilities often have to prove they can’t.
And “proving that you can’t” is not an action that meshes with this society’s positivist ethos. Accepting one’s limitations is often seen as “giving up the fight,” “resigning oneself”, even dooming one’s chances of getting better… just by having a “negative” attitude about their ability to “master”, better, or “overcome” their condition.
[ Our society so values this point of view that I have purposefully not addressed the issue head-on until now, for fear that people will discount what I have to say after they know I question — even a little bit — the benefits of positive thinking. You may think I’m being paranoid here, but you’d be surprised… this stuff runs deep… ]
Some responses that seem like compliments but can be secretly invalidating:
“Aw, you are strong. I’m sure you can beat this.”
When I get this response, this is my reaction: you are complimenting my character, but you are not trusting my judgement. I am telling you this condition is chronic, serious, and out of my control. You are doubting that, and using your faith in me as a person to do it. The emotional whiplash there is intense: being both grateful and hurt at the same time creates a painful and confusing cognitive dissonance.
It also makes it seem like it’s the strength of the person that determines their chances of recovery. This is not the case. It is not a question of the strength of the person, it is a question of severity of the condition. And it’s not a question of beating the condition, it is about understanding and living with it.
“You are resourceful, I’m sure you can find a way to make things work.”
This is pretty close to something I would tell myself when I was in a sort of half-acceptance, half-denial phase of my journey: “I’m fine with accepting this illness, just so long as I can keep living my life,” I’d say.
After a long struggle, I came to realize that this was what I was actually saying:
“I’m fine with accepting the limitations that come with this illness, just so long as I’m not limited in any way that actually limits me.”
A limitation isn’t a limitation if it doesn’t negatively affect how you live your life. So you can’t really accept the disability until you accept that it is going to limit your life, and in ways that will suck.
For a person disclosing their illness to you, especially if they have only recently learned about it themselves, this response can be hurtful, even counterproductive for them on their journey to acceptance.
“You really handle it well.” “You look good.”
If we seem to be handling the situation well to you, it is possible that we are really just hiding the situation well. More than likely, we would have preferred to keep this condition private if we possibly could have. We are finally disclosing it precisely because we are exhausted of holding together the facade.
We want to let you in because we trust you. We want to finally be able to be ourselves around you, not hide our symptoms when they flare up, or have to make up more acceptable-sounding excuses about why we can’t go somewhere or do something. Responding this way can make us feel that maybe we can’t be vulnerable like that in front of you.
In summation, there is so much value in no longer suppressing or distracting oneself from the reality that it is sad and it is limiting to live with a disability. Accepting the reality of that does not make our lives “more depressing” or prevent us from healing. Rather, it enables us to cut beneath the pleasantries and make connections with the people we care about based on emotional honesty and mutual support.
Some things TO do:
A quick (and nowhere near comprehensive) list of things that are good to do:
Bring curiosity not judgment. This is an opportunity for you to learn from the discloser, not for the discloser to learn from you.
Do your own research! Find out what it’s like for your friend to manage their condition. References like themighty.com, invisibledisabilties.org, and illness-specific discussion boards are great ways to learn the nuances of what life is like with their disability.
Avoid the there’s-an-upside reflex. To combat this common nervous reflex we have, learn to use these phrases (without tacking on a “but at least …” at the end):
“That sucks. That is the worst. I can’t imagine.”
“I’m so sorry this is happening to you.”
And, when appropriate: “Let me know if there is ever anything I can do to help.”
They are short and simple but, I promise you, if you mean them when you say them, the person you are saying them to will know.
And validation of our struggles is what we want most from the people we care about. There is no need to say more, really.