Long before I had heard the term “toxic positivity,” I experienced it firsthand at a support group for caregivers. That day I was looking forward to being in a safe space with people who were in similar caregiving situations to my own, a room where we could speak openly and honestly about the challenges we face. However, when asked how they were doing, my peers began to speak about what a gift it was to be able to care for their spouses and how blessed they felt to be in that role. No one mentioned the things I experienced daily: exhaustion, fear, stress, anxiety. The only feelings that were discussed were gratitude and optimism. It seemed that only part of the story was being told and as I listened, I was struck by the disconnect between what they were saying and what I had planned to share. Instead of the solidarity and camaraderie I was hoping for from this group, I felt lonely and ashamed.
Brene Brown says, “What we don’t need in the midst of struggle is shame for being human.” Unfortunately, toxic positivity, like what I experienced at that support group, often does exactly that. Defined as the excess and ineffective overgeneralization of a happy, optimistic state across all situations, toxic positivity results in denial, minimization, and invalidation of the authentic human emotional experience.
Caregivers, like those I encountered at the support group, are often heard using phrases that could be described as an “overgeneralization of a happy, optimistic state.” Even though their role is unbelievably hard, caregivers can feel as if it is inappropriate for them to speak their truth because they aren’t the ones who are sick. They “bright side” their experience, only sharing half of the story. This can result in a minimization of their reality, which may lead to their needs not being met as supporters are led to think that everything is fine.
Caregivers aren’t the only ones to employ toxic positivity. I have seen many examples of caregivers making the brave decision to be vulnerable and honest about the challenges of their role, only to be met with a response from the listener of, “Be positive!” “Stay strong!” or, “Well, at least…” When this happens, caregivers quickly learn that their truth is not what others want to hear. Listeners are much more comfortable when caregivers say that they feel grateful and blessed and that their situation is coated thickly with a silver lining. Read any social media post by a person sharing the details of something hard that they are experiencing, and you will find beneath it comments not of acknowledgement or support, but instead of toxic positivity.
Realizing that speaking their truth makes others uncomfortable and does not lead to empathy or support, caregivers who had stepped out to bravely share their authentic feelings often revert back to using the phrases themselves. Not being able to speak honestly about their lives can cause feelings of isolation and can prevent caregivers for asking for the help that they need.
This cycle isn’t one that can be easily undone. Most of us have built these phrases and responses into our lexicon, both as descriptions of how we’re doing and as comebacks to hearing hard news. Working to deprogram the use of toxic positivity will take bravery, vulnerability, and practice.
Here are a few ways to begin:
Caregivers, when someone asks how you are, consider prefacing your answer with, “This may be challenging to hear, but to be honest….” This prepares the person you’re talking to for an answer other than what they may be used to. You could also let the listener know what type of response you might like, such as, “I don’t tell you these things so you can fix them or make me feel better. It’s enough just for you to listen and be with me in the hard stuff.” Also, don’t feel like you have to eliminate all positivity from your conversation! You can show that both sides of the story are important with a phrase like, “I’m grateful to be his caregiver and at the same time, it’s really challenging.”
Supporters, pay attention to your feelings when someone shares something challenging with you. If you are feeling discomfort, remember that the point is not to make yourself feel better in this moment, but instead to support the caregiver. Affirm what they said without trying to fix it by using statements such as, “That sounds hard. Thank you for sharing with me how you’re feeling.” You can always ask if they would like you to brainstorm solutions with them or if they would rather you just listen. Avoid trying to make things neat and tidy for yourself by bringing toxic positivity into the conversation.
Many of the hard things that are on a caregiver’s plate cannot be removed, but shame for being human? That we can help with.