Hang in there! (what NOT to say)

“Hang in there!”

This is one phrase to please not ever say to me. It’s one that, unfortunately, several people have said to me even in the past month, let alone the past many years. To the average person, perhaps even you, this phrase might feel harmless, but to me, it’s a trigger that makes me want to scream and break something.

People mean well when they say “hang in there.” They say it with kindness and what I think is meant to be gentle encouragement. But I’ve been “hanging in there” for eight long years, from a now (metaphorically) thread-bare rope. My energy and strength are almost gone, and there’s nothing under my feet but an abyss. Sometimes it feels like I can’t hang on any longer, and it would be easier to simply let go.

For almost exactly eight years, I’ve been living with a traumatic brain injury (TBI), and a long list of related diagnoses which have rendered me disabled for nearly the past two years, including chronic fatigue syndrome (CFS) and dysautonomia/POTS (read more about these in my previous blog post here). My days consist of watching way more TV than I’d like to admit, and lots of time lying on the couch. Some days, of course, are better than others, but overall, things have gone downhill the past few years since the publishing of my book (note: there’s no correlation there). It’s taken a lot of time and energy to get well-educated in my conditions and how to manage them, and a lot of trial and error with different treatments, medications, etc. It’s taken almost as much energy to assemble my healthcare team over the years, too.

To say, “hang in there” at the end of a call or appointment, in my mind, conjures up the image of me hanging from a thread-bare rope off the edge of a huge cliff, arms shaking, fingers slipping one by one, while you (the person saying “hang in there”) smile, wave, and happily walk away without a care in the world. Meanwhile, I’ve got next to nothing to hang on to, no footing, and nothing to catch me if/when I eventually fall. To me the phrase implies that if I simply keep hanging on for dear life, I’ll be fine, and that there’s nothing worrisome in my scenario. Honestly, I’m done grasping and hanging on for dear life. It’s exhausting. Don’t tell me to “hang in there.” Instead, give me a hand or something to stand on. You might not be able to “save” me or pull me up single handedly, but stop pretending that I’m just fine dangling there without support.

For those of us living with chronic health conditions, or at least I speak for myself, there may not be someone to swoop in and save us, making our ailments go away. It’s taken lots of time, inner work, and therapy to come to terms with my life as it is now. There is always the possibility that things will improve, along with the possibility that they won’t. Hope for me isn’t about wishing my challenges will go away, but rather hoping that I will make the most of each day, even the bad ones, within my capacity. Hanging onto false hope or unrealistic expectations isn’t healthy for anyone, and believe me I’ve done my fair share of grasping both with white knuckles over the years, not wanting to let go. Easing that grip took significantly more strength than holding on. Acceptance and coming to terms with our reality is often harder than living in denial.

I’m tired. I’m tired of trying to climb back up the metaphorical rope. I’m tired of hanging on, waiting for you to return with some sort of useful support. Even if you (including my healthcare team), don’t know what to do next, don’t have anything else to offer when I ask, or don’t know what to say, just say so. It’s okay. Just please don’t leave me hanging. Say something like:

  • “I know this sucks, and I hear how challenging it is for you.”
  • “You’re not alone: we’re going to keep moving forward together.”
  • “You’re doing the best you can do, and I really admire you for it.”
  • “I don’t know what to say or do, but please let me know if you’d like my support at any time.”

So no, I won’t “hang in there” anymore. I chose to let go, trust the fall, and believe that even though my life isn’t how I wanted it to turn out in many (but not all) regards, I’ll still make it the best damn life I can.