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15 Reasons People Decided to Speak Out About Their Illnesses on Social Media

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It is a big decision to come out publicly about issues that impact you deeply as it relates to mental and physical health. Telling your story on social media is another level of disclosure that could come with some amazing rewards for you and your readers, and life-altering consequences. A lot goes into the decision and should not be taken lightly. Social media makes us vulnerable and can cost us mentally and physically. I am always inspired by those who chose to do it.

I have been speaking publicly about my trauma since college when I was doing rape crisis education and support. It makes me feel good, like I am making a difference and taking my tragedy and producing something better.

I see myself as an educator and a champion for survivors. I spoke about my sexual assault openly and was comfortable doing it after a while. I speak because others cannot. I choose to share my story so others will see themselves in me and find peace that they are not alone.

In the mid-90s I was diagnosed with mental illness. For me at the time, I was certain I would never disclose this to family, friends, or the public. My diagnosis said things about my past that I did not want anyone to know. I also felt I would be unfairly judged and discriminated against. In 2011, I joined the National Alliance on Mental Illness (NAMI) and you could not to shut up me about my mental illnesses. I want to make a difference and help make everyone mental health literate. I did not want to struggle in silence alone anymore.

The Mighty asked our readers and contributors to answer the question, “What helped you make the decision to share your health story on social media?” Here is what our readers and contributors had to say:

They wanted to educate others to reduce discrimination and stigma.

“People wondering why I was always canceling, out sick, too tired, couldn’t eat anything, etc. Not only was I educating others about what was happening to me, but I was able to find others in similar circumstances.” — @lili.then.ana

“It was mostly due to wanting my friends and family to know what was going with me, but I developed the courage from seeing other people with similar experiences post their stories as well. I have now met a few people that are spoonies too through social media and made some new friends. It’s nice to be able to not feel so alone.” — @brandyrenea84

“Because stigma still exists and the more we talk about it the more we can conquer that. Also to let others know we are not alone in facing our symptoms.” — @paulamightydragon

“When I got out of rehab and re-entered the community as a disabled power wheelchair user, I became acutely aware of how differently I was treated by the public from how I was treated when I was non-disabled. I was compelled to share these experiences and how weird and frustrating they felt. When I saw how my stories supported and validated others, I began to share more deeply about my thoughts, feelings, and experiences with all areas of my life.” — Jennifer B.

They needed community.

“I started sharing my journey as soon as I got my official diagnoses. But, social media is how I got them! Other people sharing their symptoms, pictures, recommendations for how to approach their physicians, and which specialties to request helped me search and advocate for my symptoms. I am forever grateful for those who shared before me and I share for the same reason. I want others to get appropriate treatment for their diagnoses with less struggle.” — @jj_zeb_eds

“To let other people who might be experiencing the same or worse that they were not alone or a burden (as I deeply felt the first years of my illness). Also, the need to find community, who ended up like good friendships around the world, actual friends who understand how harsh this process can be.” — @Andeangrumpykitten

“I have no idea how I ended up on The Mighty! I wasn’t looking for any social media group nor had anyone suggested it to me. ???? Regardless, I’m very happy I’m here! I feel safe here. There is so much support. Such caring people and no judgment. Connection with others. Friendships made.” — @phc_452

They wanted to be honest and normalize their illnesses.

“To combat my internal shame and normalize my disorder and recovery” — @about_a_girl_eating

“Slowly I’m becoming more vocal and open about my recovery. I kept so many secrets in my eating disorder and alcoholism, and I hid a huge part of me from the world. I want to be honest and feel seen.” — @emilygrannemann

“I’d faced years of physical and mental consequences from staying silent. I wasn’t happy with my life. I was tired of having been secretive for so long. I didn’t yet have a job to potentially lose, and even though I knew I risked difficulty finding a post-college job, I knew my life itself may be at risk if I didn’t share.” — @kellychristine333

“I couldn’t not share it. It’s part of me and always will be and I want anyone who decides to follow me to know that life isn’t as picture perfect as some people make it seem. I want to end the stigma attached to mental illness and make it easier for people to share their stories too” — @min__fo

“I decided to share my story because I was tired of pretending to be okay when I wasn’t. I’m not okay!! And me sharing that might help other people feel less alone.”— @chronically_juzels

They didn’t want other people to feel alone.

“I wanted others who may be experiencing something similar to my journey to not feel so isolated and alone.” — @amynjoedecker

“I’ve spent, over 20 years, taking care of myself because doctors weren’t helpful. In my quest to take back control of my life, I wanted other people to know they weren’t alone in their health journeys. I am my best advocate and I wanted to make sure others realized that about themselves, too.” — @gina.n.campbell

“It was when I knew I had nothing to lose. I had to be sure I was in a good, safe space mentally, and then I went for it. I don’t regret anything I’ve shared because people have commented that they were experiencing the same thing but thought they were alone. That right there is why I shared my story.” — @Jenn D.

“I’d already been writing about my epilepsy for years. It only felt natural to write about my mental health issues, too, as there is a high comorbidity between the conditions. My audience were appreciative, and my readers who didn’t have epilepsy were able to see themselves more represented too.” — Shaun K.

“For me, it’s the power of keeping people from feeling alone. When you share your story, it can give other the confidence to do the same.” — @dub_c21

“I decided to blog about my mental health when I realized that there are so many people out there suffering alone. Or trying to understand their loved one’s mental illnesses. I quickly learned that it was beneficial for me too, as I got a lot of support from others once I was willing to share.” — Devi K.

There were so many great comments, and we could not put them all here. I am so inspired by all of you to share far and wide about my experiences and work to educate, support, build community, and remember that none of us are alone.

Stay Mighty social media heroes!

Getty image by Nadya Ustyuzhantseva

Originally published: September 11, 2022
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