The Silence of Shame

Each month, I scroll through the health awareness campaigns.  This month, I noticed a theme — almost all of these conditions involve stigma.  While it is always important to shout out each illness and bring awareness and funds to research that we may not have heard of, it is extra important to bring light to the darkness of shame.

I remember being in therapy several years ago, before any (accurate) diagnosis, when I finally expressed the staggering role that shame has played in my life.  Not only had I been sick for decades, but the type of sick was such that I couldn’t share with anyone without fear of stigma and ridicule.  Diarrhea. Fungal infections. Vaginal ulcers. Bladder incontinence. These (and the long list of other) symptoms are not something that friends and neighbors are interested in hearing about.  In fact, they set you up for some harsh bullying or, at the very least, awkward ostracization.  

Letting in the Light

My therapist decided everything else on her docket would wait.  THIS was more important. She told me that shame is like a mold or fungus.  It thrives in the dark. Even if you clean it out, it will creep back in unless the area is exposed to the light.  A LOT of light, for a long time.  

Shame is brutal.  It eats away at your confidence, your self-image, your ability to interact comfortably with others. By cleaning out the mold of shame, you liberate not only yourself, but everyone else who needed that same light.  Bringing these issues to the surface, getting the public to accept their existence and acceptance is healing for society as a whole.

I found my own healing through therapy, but also through organizations like Suffering the Silence.  STS works constantly to tell the stories of illness and beat back the shroud of shame and stigma.

Speak your truth!

Right now, we are in a unique position, as people with chronic conditions.  Because of COVID-19, the world is becoming attuned to the fears, decisions, and challenges of illness.  There is unprecedented understanding and empathy right now. What if we used this opportunity to speak up about our conditions?  Tell our stories. Be honest about the less accepted symptoms on our list.  Learn about a stigma that you don’t have to face. Support others who are choosing to be brave.  Stand up to those who choose to use shame as a weapon. Now is the time for solidarity, to turn our sickness into strength, to beat back the silence.

For inspiration, here are some of the illnesses represented in April awareness campaigns.  

Alcohol Awareness Month

Addiction carries so much emotional weight, and shame is certainly one of those emotions.  People like Kyra Cole are sharing their stories on Instagram, reminding us each day to be proud of where we are and if others choose to judge, that’s on them and not us.

Irritable Bowel Syndrome (IBS) Awareness Month

Oof.  While there are many subtle expectations to keep quiet, the social norms around poop is quite vocal.  Even as an adult, I am frequently told that it’s not ok to discuss symptoms involving poop. There’s also a strange gender difference here.  I can’t count the number of times I’ve been told “girls shouldn’t talk about poop,” even that it’s “unbecoming of a lady.” This shame can even make symptoms worse.  My IBS Life is a podcast all about these challenges, and more!  It’s creator, Christine, also has empowering messages on her Instagram.

STD Awareness Month and National Youth HIV/AIDS Awareness Day (April 10)

What’s one of the only things more stigmatized than poop?  Sex! Yet the best way to prevent STD’s and HIV/AIDS is to talk openly about it!  One of Suffering the Silence’s projects is a docu-series called Trust Me, I’m Sick.  In it, Giuliani Alvarenga shares openly about his HIV status and the importance of talking about it.

National Autism Awareness Month

Agony Autie is a YouTube channel of videos about autism, created by an autistic woman, to break down the stereotypes and misconceptions of Autism.  We fear what is different, especially when we are conditioned to think of the differences as threatening.  If we can understand behaviors, we can erase the stigma, and create spaces accessible to all.

National Infertility Awareness Week (April 19–25)

Infertility and miscarriages are devastating, and affect 1-in-8 families.  Yet the societal norm is to keep this information to ourselves! It brings so many emotions all at once — first, suffering the physical toll of a miscarriage or infertility treatments, but also shame, fear, grief, and the feeling that your body has let you down.  It becomes agonizing to see other people with their children. National Infertility Awareness Week has done so much to show women and families that they are not alone.  This pain is very common, and something that should bring us closer together, rather than keeping us isolated.

Women like Rebecca (below) have, after years of silent heartbreak, begun to share their stories publicly:

Do you feel ready to bring light to stigmas you’ve faced?  Share your story in our Friends in the Fight facebook group!