Giving the Community a Voice

by Ari Paulsen
Giving the Community a Voice

If you could let the world know anything about your chronic illness, what would it be?

Living with chronic illness often involves keeping quiet — hiding our pain to save our loved ones discomfort; not sharing our experiences for fear of shame or stigma; holding our tongue when those who clearly know little about our condition give unsolicited advice.  This silence can be an important form of self-preservation.  In truth, there are times when pretending to be ok can enable us to find more joy and foster new relationships!  Over time, however, it can lead to isolation, misunderstandings, and increased sense of shame.  

It is therefore crucial to also find times to let it all out!  Speaking our truth — whether with a therapist, a trusted friend, or a wider audience — airs out the shame and trauma that can accompany long-term experiences of illness.  Sharing our stories can help us to feel that our experiences are valuable, and allows others to feel less alone in their own experiences.

This week, we invited our Friends in the Fight to break the silence.  We asked “if you could let the world know anything about your chronic illness, what would it be?”  As the responses poured in, we felt that sense of connection that comes from such a vibrant and empathetic community!  

giving the community a voice

Some responses addressed the silence or facades that we use to hide our true experiences from the world, and the effort required to make that happen:

“I put on a face every day so you don’t see my pain”

“When you see me looking good, I’m doing everything I can to hold it together!”

“Not all chronic illnesses are visible. Just because we look fine doesn’t mean we are.”

understanding and empathy

Many Friends commented on the hurt caused by judgement by people who don’t understand what it’s like to be sick or in pain, and the importance of empathy:

“I can’t control how I feel”

“’Faking it’ is always out of the question.  There’s never a time when that is true.”

“Listen, just listen”

“I gave up half my life looking for a cure. I don’t want sympathy, but empathy goes a long way.”

I know my body

We know our bodies better than anyone.  Within a world of doctors and well-meaning friends, sometimes we need to remind the world that we are actually the experts of our own experiences!

“Not everyone fits the textbook definition of it!”

“Don’t take away my right to choose just because you think I can’t do something”

“Uninformed diet and health advice are SUPER frustrating and potentially dangerous!”

“No two patients are alike, we are a spectrum”


The responses I found most empowering were those that boldly asserted their needs and identity without judgement or defense.  Sick, and proud.  Sorry, we’re not sorry.  This is our life and we get to decide what that means!

“Don’t underestimate me “

“It’s ok to be mad about it!”

“There are days where I am able and days where I can’t.”

“It sucks most days, but if there were a “cure all” I’d feel like I’d be losing part of my identity.”

Thank you, Friends in the Fight, for giving voice to our community!  

Want to join the conversation?  Join the Friends in the Fight facebook group or follow us on Facebook, Twitter, and Instagram.

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