Sometimes in my Facebook Support Group, a post begins with the phrase positive post. This usually precedes a report about something that brought joy or balance to the writer. Often this kind of post is about holding steady during an event like attending a graduation or birthday party. These little successes are wildly celebrated, with emojis and loads of congratulatory comments. There are also daily laments about debilitating symptoms, lifestyle limitations, being misunderstood, or missing important events and activities. Laments are met in equal measure to posts that celebrate. Comments offer understanding, loving kindness, empathy, and encouragement. The result is feeling accepted, seen, and heard. This is a powerfully healing gift, and while the lamentations might sound negative, the end result after reading is a feeling of optimism.
One day while visiting my group, I came across a post about toxic positivity. The writer felt it best to embrace feelings of frustration and sadness about their illness in order to find peace and have hope. But if they attempted to discuss those feelings with others, they were met with responses that left them feeling isolated, embarrassed, or worse yet, ashamed of being ill. Their post pointed out the difference between toxic positivity and optimism. Toxic positivity maintaining that one MUST be positive at all the times and avoid negativity, including negative emotions. Optimism is about being present to and accepting of all circumstances and feelings (positive or negative) alongside willingness or hope for better days ahead. The post had hundreds of comments, with a predominant theme being that people in good health think that people with invisible illnesses should not “feel bad” or “be negative” about these unfortunate circumstances, but instead should remain positive.
The commentary was fascinating, with many reflections about what happens when people raise topics related to illness and especially Long Covid-related illness. That topic is met with awkward silence, subject-changing, or cheerful positive commentary. Silence or subject-changing responses seem to stem from the listener 1) not knowing what to say; 2) not wanting to make “bad things” worse; 3) not believing the speaker, or 4) being triggered into personal discomfort. It’s thought that cheerful positive responses come from a place of wanting to help or uplift the speaker with “good vibes” or “look on the bright side” comments. However, this can often have the opposite effect, leaving the speaker feeling disconnected or dismissed.
The “think positive” cultural movement can often be dismissive of the complicated emotions that arise from illness, trauma, or loss. The darker side of that dismissal diminishes the voices of those who have suffered abuse or trauma. That said, we must remember that not everyone is a trained psychotherapist, and many people have their own suffering to deal with and simply cannot hold space for others. Keeping things sunny and positive is certainly important, but when people talk about “bad” or difficult things involving grief or loss (i.e. of a job, loved one, vitality, physical function, etc.), the “just think positive” response can shut down the conversation fast. This type of response can trigger the receiver to question, deny, or dismiss feelings that need to be validated and processed. Avoiding or dismissing “negative” feelings is not healthy, and can result in isolating behavior or depression. Receiving toxic positivity can also result in feelings of guilt or shame and worries about not doing enough, being enough, or about being unable to move past troubling challenges.
When the need to process does arise, it is essential to find a way to bolster feelings of optimism, hope, and inner peace without dismissing grief or trauma. A hallmark of healthy self-care includes finding a way to process these feelings. Doing so with companions or family members is not always possible for many reasons. Finding a companion, group, or counselor to hold space for safe processing can offer solace and restore hope. I’m personally so grateful for my group. Who knew that thousands of perfect strangers would be some of my most comforting allies in this health adventure? I hope everyone reading has someone to talk to when the need arises. Feel free to message me if help is needed to locate resources for talking things through.
Thank you for reading! Next time, I will share about holding space.
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. Blog post commenting helps to build community and spark important dialog. All comments and questions are reviewed prior to public posting. If you prefer to have a comment remain private, please indicate that clearly and provide an email address if you desire a reply. Comments about Aleia’s personal circumstances are gratefully received but will not be posted for public viewing. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.