The holiday season is in full swing, and for those of us who live with traumatic brain injury (TBI) and other chronic health challenges, the season poses additional challenges. Here to help are some tips that I’ve learned in the eight years of living with a TBI and a plethora of related diagnoses.
Come and Be Prepared
If you have light and sound sensitivity, be sure to bring ear plugs and sunglasses with you to any gatherings. Having these things on hand might be second nature to you, but just in case you’re new to this, you might consider keeping a pair of each in your purse, bag, or car at all times (even if you don’t drive, keep a pair in the vehicle you are in the most). Of course, bring any medications, supplements, or other remedies you (might) need with you, too.
Depending on the group and your relationships with the people attending, be prepared for how you might respond to TBI-related questions or comments, especially ones from an extended relative you haven’t seen in two years such as, “Oh, I get headaches a lot, too, so it’s the same thing,” “You have memory problems? You must be getting old,” or, “You’re still dealing with that?” When people either don’t believe you or make unhelpful comments, it’s beyond frustrating and can also hurt emotionally. If you know before you gather that you might run into comments like these, consider role playing with a trusted friend and come up with some constructive responses that you can tweak to meet the situation or person, if needed. Remembering your lines, let alone recalling individual words themselves, might be more than you can do, so it’s okay to write them down. If anyone makes a comment about you having to pull responses out of your pocket, do your best to let it go and do what you need to do for you.
Understand that you might not be able to control your emotions, at least not all of them all the time. Emotional dysregulation is normal and common among us in the TBI community, and is still an issue for me, though much improved, even eight years later. Others not familiar with the TBI journey might not know that this is “normal,” and that there is not much we can do about it in the moment. It’s a result of brain damage and, like all TBI related challenges, takes time, treatment, and patience to adapt.
Families are complex. Some are super supportive, others not. I hope you have the former. If you run into difficulty or out of energy explaining things to your family, direct them to resources where they can learn for themselves, such as my book, the Brain Injury Association of America, BrainLine.org, and others. If they like movies and sports, suggest they watch HBO’s The Crash Reel about elite, Olympic bound snowboarder Kevin Pearce (who later started LoveYourBrain, a yoga program specifically for the TBI community, after his severe TBI). It’s not all on you to educate them about everything TBI. They can read, watch, and learn for themselves.
Our society isn’t good about knowing how to be present with other people’s discomfort or suffering, especially when they don’t know how to or can’t “fix” it. This can lead to others immediately changing the subject when you bring up your TBI struggles and limitations, making inappropriate comments, or giving unhelpful and unsolicited advice. Establish your boundaries and hold them. Tell people what you need or want: for them to listen, or to offer suggestions when you ask for them. As if you didn’t already have enough to deal with, you have to help others know how to support you and what support looks like to you.
Whether you’re going somewhere or hosting, notify attendees ahead of time of your needs and/or limitations. For example, when my nephews were younger, they could be really loud with shrill, high-pitched squeals, screams, and laughter. While this is expected of young children, it literally hurts my ears and makes me involuntarily agitated. I can’t tolerate loud noises, especially high-pitched ones, so I had to let my family know and the boys were asked that, while I was around, to please keep their voices down because it hurts my ears. My nephews did a good job, albeit still too loud for me, but I put in my ear plugs and it was manageable.
Consider letting people know, even when you or they arrive, how much energy you have and how you’re feeling that day so they know and understand if at some point you need to lie down, go into another (quiet/dark) room, or leave altogether.
Have an Exit Plan
One of the many facts of life with a traumatic brain injury is that we get tired easily and quickly. This will vary from person to person, as well as on any given day due to countless variables. Neurofatigue is real. If we push too much, too long, and too often, we usually pay for it and must have at least a day or more of rest and recovery. At least I know I do! If your internal battery is already flashing warnings the day of or suddenly drops dangerously low while at a gathering, be prepared to leave early. Kindly excuse yourself and go home to recuperate. It took me a while to get over disappointing people when I had to cancel get togethers, turn down invitations, or leave early. Sure, people are disappointed, but it’s more important to not do harm to yourself by pushing when you need rest. When people really care about you, they will understand and support you, even if they’re disappointed.
Having said all of this, know, too, that it’s perfectly okay to not accept any holiday invitations. You might be depressed, too tired, overwhelmed, not feeling well enough, or whatever reason. You’re not obligated to go any holiday gatherings, even if it’s your family. Do what is best for you and your health, not others’ happiness or expectations.
If you have additional suggestions for TBI holiday survival tips, please let me know. I’d love to hear them, as well as constructive feedback on these shared here.
Wishing you the best possible holiday season!