Dealing with hidden disabilities after a brain injury
Navigating difficult moments with friends, family, and colleagues
Coming to terms with hidden disabilities
In the weeks and months that follow a brain injury, you may not yet know the contours of your symptoms. You might have been told that a brain injury is like any other injury and think you’re already past the worst of it and you’ll just get steadily better from here.
So you try to go about your business, not realizing that your injury has given you a set of hidden disabilities. Maybe you can’t deal with loud multi-sensory environments. And when people invite you to such places, you accept the invitation. ComicCon anyone? Meet us at the restaurant! Let’s rent a boat.
Having received zero guidance about all this, the process of coming to terms with these hidden disabilities becomes frightening and overwhelming. It’s the definition of adding insult to injury.
Hidden disabilities and public humiliation
When your disabilities are hidden, man, is it tough to admit having them. Especially when you feel immense social pressure to do things that your friends and family take for granted, things they can’t even imagine would be difficult for someone else to do. For example, be in a loud restaurant with four conversations happening simultaneously around you.
It only makes matters worse to know that some of them think it’s all in your head. Which it is. Just not in the way they think it is.
It’s human nature for things to be “out of sight, out of mind” and it can be shocking when the people you spend the most time with (even your partner) forget that you can’t do something, and put you in a situation where you are publicly humiliated.
No one would expect the partner of a paralyzed man in a wheelchair to take him to a mountain trailhead (along with the family because why not) and say, “All right, here we go!” This scenario doesn’t happen because that man’s disability is obvious.
In fairness, this hypothetical man’s disability may be well defined and probably fixed, whereas your hidden disabilities are in a state of flux. Not only might they vary from day to day, but the timeline of their eventual resolution remains unknown.
When your significant other becomes a buffer
When someone’s disability is hidden, that person’s significant other may try to protect them from the stress or potential humiliation of moments when their disabilities become visible or undeniable. This role may fall to the significant other precisely because everyone else in their lives so easily forgets that the disabilities exist.
Since moments when the invisible becomes visible are unavoidable, if the disabled party expects his or her partner to succeed at this every time, it’s a no-win scenario and it creates a strong undercurrent of chronic stress.
The parable of the financial advisor and the investor
I hope the following parable will give you and your significant other a useful framework for moving forward.
Imagine an investor and her financial advisor. We all know the stock market rises and falls from day to day, week to week, or year to year, even though the overall long-term trajectory is upward. Zoom out far enough, and these day to day peaks and valleys disappear into an overall upward trend.
But today, things went down. Maybe even way down. And the financial advisor feels like shit. Feels like everything he’s doing is wrong. His whole method. His sense of progress.
Then the investor walks in. She’s all smiles. She knows nothing about the current state of things. Should he keep the present situation hidden? Why not—this afternoon is sure to be better.
Besides, if he tells her the state of things now, she might balk and sell, and then everything really would be truly ruined because the losses would be made permanent. Better to say nothing and just ride it out until things rebound, right?
In this scenario, the financial advisor has complete information. He knows what is truly up (or down) moment to moment. The investor has incomplete information (and on some level, each of them prefers it this way, so they can go about their lives).
Now, if the relationship between the investor and the financial advisor was truly strong, if their communication and alignment was clear, then day to day honesty would be possible and even welcomed (as a form of relationship hygiene if nothing else).
Sure, the advisor doesn’t have to tell the investor about every little up or down, but when the advisor is having a bad moment, bad day, or a string of bad days when he’s easily angered and generally not great to be around, he should take a deep breath and tell her why.
As in this parable, the person with hidden disabilities has complete information, while those who look at him and see what appears to be a fully functional person (including his partner and loved ones) have incomplete information.
If you’re having a bad afternoon, day, or string of bad days, trust that your significant other can handle the news. You will immediately relieve the stress within you—the stress of keeping things hidden.
You will also lower the stress of your significant other, because having incomplete information when you suspect something is wrong is stressful. Remember that you’re both playing the long game here. You’re not “day traders” in your health or in your relationship.
Maintaining this level of communication will become critically important as you begin to do the difficult work of moving from disability to ability, because that process involves deliberately triggering your symptoms.
And yes, moving toward this level of communication with other people in your life (friends, family, colleagues) is also ideal, but with your family and those in the inner circle, it’s vital.
Hidden disabilities at work
When you’re used to being a neuro-typical person without disabilities, the idea that you might be dealing with disabilities (be they temporary or long term) can be frightening as hell.
You might expect your employer to push you into the abyss where all the undesirables are destined to fall. In other words, you might be thinking this is an all-or-nothing scenario where you either continue to work the way you used to, or get fired.
Many people with hidden disabilities have been actively working around you for years. Some of them have what’s known as accommodations. In the United States and elsewhere, employers are required to make accommodations for employees with disabilities. (Often, such accommodations lead to workplace improvements for everyone else, but that’s another story.)
Obviously, every employer is different, and your workplace may treat you terribly or fire you unfairly. Heck, I know people who were fired after telling their employer they had cancer (sure, it’s illegal, but that doesn’t make it any less destabilizing).
In all likelihood, you are not in an all-or-nothing scenario. You can probably work with your employer to figure out a middle way forward using accommodations. For example, if you worked in a big open office with jukeboxes blaring all day, you could work remotely or get a private office for a time. It’s now easier than ever to work remotely.
In the immediate aftermath of your injury, the contours of your disabilities are unknown, as is the timeline for their diminishment or resolution. The hidden nature of these disabilities makes it difficult to admit (to yourself or to others) that they exist, especially in public situations where you might be humiliated.
If your partner becomes a buffer between you and the stress caused by your disabilities, it may create a potentially ruinous stress between you. Use the parable of the financial advisor and the investor as a framework for open communication about the ups and downs you go through with an eye on the long game. This will prove especially important as you move through the rehabilitative process.
Don’t assume that you need to keep your disabilities hidden from your employer. If necessary, work with your employer to get the accommodations you need in order to continue working. They may be more understanding than you expect. Such accommodations are also guaranteed by law.
Brainwave is an informational resource for people whose symptoms haven’t resolved after a concussion or mTBI. I endeavor to present this information in a clear and concise way, spelling out what’s backed by science and what remains unknown. Nothing here is meant as a substitute for professional medical advice, diagnosis, or treatment. I am not a physician or a healthcare practitioner of any kind; I’ve simply had a lot of sports-related concussions and had to learn this stuff the hard way. If you found this information helpful or know someone who might benefit from it, please share and subscribe to Brainwave.