Chapter 1. What the Heck?
Invisible disabilities – talk about ruining a totally cool word by plopping it against a word that’s utterly depressing. Invisibility has been a fabled superpower since our childhoods. It ranks in the Top 5 Most Wanted Superpowers along with flying, predicting the future, mind reading, and eating nothing but pizza and donuts yet never gaining a single pound.
In the case of an invisible, or hidden, disability, “disability” refers to something assigned to us by a cruel whim of the universe. “Hidden” is a corollary of that whim, the condition that no one can see our disability. They have no idea how we feel. It is left to us to tell them.
It’s like you could write a whole book on the topic. Well PRESTO, I did! Here it is.
If you’ve made it this far, like, you know, opening the thing, you surely already know what a hidden disability is. You’ve got one.
But all the same, I’m going to share with you my definition of hidden disabilities, if for no other reason than I worked hard on the thing. See, despite my exhaustive and thorough research, I never found a definition that satisfied me. It’s like we’re so invisible and perhaps even non-relevant that we can’t even get a decent definition. So, I made one up. Because we are so relevant.
hidden disabilities are conditions that include cognitive difficulties, mental health disorders, learning differences, physical pain, fatigue, or other physical conditions that are not apparent to the onlooker but significantly impact one’s daily activities.
Notice three parts to this definition. The first part covers what a hidden disability might be, from a cognitive impairment to chronic pain. The second part is the “hidden” part: not apparent to the onlooker. And finally, the “disability” aspect: the fact that our day-to-day lives are substantially affected. Work. Keeping up the house. Socializing. Pursuing our passions. Taking care of our families, including fur families. Self care. Sex. Flossing. All the things.
One of the great blessings we have in life to help us through difficulties is people. Yes, I’m a fan. But to get help, we need to connect. And to connect, we must be able to communicate.
Let’s talk talking.
Chapter 2. Why We Must Communicate
Back to that invisibility superpower. It might be totally awesome to go unseen. Invisibility is the perfect shield against mockery, shaming, judgment, and bumping into the ex in the ice cream section, where invariably you’re wearing your most frayed “laundry day” outfit.
But when it comes to disabilities, invisibility can be problematic, in that we totally miss some truly profound benefits to speaking up. The best of which are:
1. Get off our islands.
Living with a hidden disability is living in a lonely place, like being marooned on a desert island, but not even as pretty, and totally void of your favorite indulgences you once declared to be your “desert island food” and “desert island song.” We’re in the place where we feel like no one gets it.
So say something.
I occasionally will post on social media something about my chronic conditions. Usually, it’s a statement about the depression which arrives as a symptom of my fibromyalgia. I try my best to describe it—such as how it comes on as suddenly and as naturally and often as inexplicably as a sneeze.
Whatever I’m sharing, every time I do it, whether on social media, at a workshop I present, or with a stranger at Staples, people come out and share back. Nobody’s getting cured and nothing’s getting solved, but suddenly we’re not so alone anymore, and that is definitely something. We’ve helped each other off our islands.
One time I was waiting on an elevator in a college academic building just after doing a classroom presentation on disabilities. I had dashed out rather quickly after I was done speaking, as the professor had her own lesson to finish up, and I was eager to get on the road ahead of a snowstorm. A student burst out of the classroom and literally ran up to me, crying. Tears of release. All she wanted to say was how grateful she was at not feeling so alone anymore.
Sometimes our disabilities make us feel as if we have so little to give, but this rescue boat off the island is something we can give.
2. Prevent misperceptions.
Like I said, I have fibromyalgia. I also have chronic fatigue syndrome, osteoarthritis (in my fingers, toes, and spine), and degenerative disc disease. My least favorite symptoms of all these conditions are the fatigue and cognitive impairment, because they take away time and life.
An annoyance that rides with the cognitive impairment is speech difficulties. When my symptoms are acting up, I may slur, stutter, get words wrong, or just suddenly lose my ability to get words out at all. Being a professional speaker, I can tell you this is loads of fun. Actually, it’s terrifying.
In each of my programs, I find a way to establish with my audiences that a cognitive impairment may potentially affect my speech. My motivation is to prevent misperceptions. If I do not communicate this, and my symptoms manifest, I set myself up for a slew of inaccurate conclusions such as my being an amateur, or unprepared, or having something other than coffee in my cup.
It does neither me nor my audience any good to annihilate my credibility by failing to communicate about my condition.
Please do the same for yourself. Communicate to others what’s going on, so they don’t assume the worst about you. Yeah, maybe you have thick skin, and maybe you don’t care, but your failing to communicate may prevent you from doing something positive. An example is me, and how my messages of advocacy for our community would fail to transmit if I lost credibility as a speaker.
3. Set expectations.
Nothing ruins a vacation, or a relationship, or even a lasagna like bringing along our silly expectations, yet we all do it just the same, bullheadedly setting ourselves up for disappointment. Other people have expectations of us, and if it’s not bad enough having to feel crappy pretty much all the time, we get to go and disappoint the people around us while we’re at it.
It’d be way easier if they’d just learn to not have expectations to begin with, but we all know how hard that is. So, as we are often forced to do in all matters life, we need to accept this reality and simply do the next best thing, which is tell people what to expect from us.
How? Well, I’ll get to that very soon, because it’s the whole point of this book. Right now, I’m covering the “why” first.
4. Give yourself a break.
Speaking of hard things to do, here’s one that’ll definitely take some courage … but I believe in you!
We become great actors. It’s one of the perks of having a disability that’s hidden. With a bit of effort, we can keep it hidden. Maybe only for a certain period of time, maybe only on certain days, but it’s something most of us can do. It seems easier to just be “normal.” It feels like it’ll be easier on everyone around us, too. We’re doing three huge disservices with our pretending, though. Two of these disservices are covered below in reasons 5 and 6.
The other is just how exhausting it is. When we keep our disabilities hidden instead of accurately communicating—or even passively conveying by simply letting it show—we wear ourselves out in the same way we do in any instance of pretending to be someone we’re not. It’s just like bluffing in class about a chapter you didn’t read, or impressing your high school rivals at the reunion, or cooling your emotions on a date, or curbing your profanity around the in-laws. Pretending wears us out.
It’s even worse for those of us with disabilities. Not only are we emotionally and intellectually drained the same way anyone would be, but we are exposing ourselves to that dreaded universal trigger: stress.
Stress hits many conditions hard, from depression, to fibromyalgia, to Crohn’s. Also, our pretending often involves overly exerting ourselves physically, which, again, can be a devastating trigger for both mental and physical conditions and can even cause serious injury.
I know you hear it all the time. I know you’ve got stuff to do. I myself have been so guilty of this quite often. A big reason my Splat System exists is to prevent this…. Don’t overdo it.
Ergo, ease off on the pretending.
5. Incite action with awareness.
This one is very simple but very huge. As long as our disabilities stay hidden, people just won’t know. They won’t have an inkling what true insomnia feels like. They won’t have an understanding of how much diabetes controls your life. They can’t fathom how out-of-control rage can be.
And so, no one will do anything about it.
We need awareness because we need research, we need funding, we need the acknowledgement, and we need the cure.
We need prevention.
We need credibility.
We need accessible, affordable, innovative health care … where medical and mental health professionals, not insurance companies, direct our care.
Again, this is something you—someone who may feel helpless or even useless—can actually do. Give. Just, talk about it. Let it show.
6. End the stigma.
This could go under the previous header. As I got listy up there I could have just added in, “We need to end the stigma,” but this needs to be talked about a lot more than that, because this needs to be a movement.
I’m talking social movement here.
We live in a realm of humans who so very often expect each other to just keep our “problems” to ourselves. It happens in varying degrees in different subcultures and groups; men, for example are pressured to “man up.”
It happens, and it’s devastatingly widespread. People just don’t want to hear it, or, they “can’t be brought down,” or they have their own troubles and aren’t in the mood for yours, or they deal with things by just ignoring them and think you should, too, because that’s supposed to just work for everyone, or they’re frustrated about not being able to fix it so they’d just as soon not know, or that’s just how they were raised.
Or, that’s just what we as a society do.
Then add additional stigma that’s specifically assigned to many of the conditions we deal with: bi-polar disorder, depression, and other mental illness; addiction; any condition that makes the fact that we poop more apparent than people are comfortable with….
Judging or shaming someone for a condition we have no control over is simply cruel. OK, fine, sometimes we do actually cause our conditions. I’ll raise my hand right now and tell you I caused my fibromyalgia—which has its own stigma and punchlines—with my actions. Fibro is known to be activated by a traumatic event, such as a car accident. I caused mine by expansively mismanaging my stress.
There’s not a human on this planet over a day old who’s never made a mistake. Sometimes those mistakes come with lifelong consequences, but that one action, that one decision, that one moment, does not in any case deserve a whole lifetime of shame.
I don’t even like the definition of stigma. If you look it up in the dictionary, the definition includes something like, “a mark of disgrace,” as if the person who is the target of a stigma is actually marked, or flawed. But what is stigma really, other than something society just decides in our own brains is unacceptable? There’s no literal or figurative mark on someone unless other people place it upon that person like a scarlet letter.
Our best defense against the stigma and the shame is to just talk, like we know there’s nothing wrong with us. We might be sick people, but we’re not bad people. No illness is a moral flaw, and neither is talking about it.
It’s not going to happen overnight, and it’s definitely not going to be easy, but every time we do communicate about it, in whatever small or big way that’s nearly comfortable, we get a little closer to normalizing the conversation. We get a little closer to our disabilities being differences, not marks of disgrace.
What’s in the rest of the book?
- Chapter 3. The Splat System
- Chapter 4. Good Grief
- Chapter 5. Communicating with Ourselves <—this is where you learn all the ways to *use* the Splat System!
- Chapter 6. Splat on the Job
- Chapter 7. Secrets from the Stage
- Chapter 8: Self-Care Toolbox
- Chapter 9. Within What We Have
- Chapter 10. After This