Why I started talking about my chronic illness online
Too many of us have stories of doctors not believing our pain, years spent being misdiagnosed, and struggles in accessing the care we need (from exorbitant costs to previous intimidating appointments). Often, health care obstacles are directly tied to medicine’s gender bias, as well as stigmas relating to our race, ethnicity, sexuality, non-binary gender identity, age, and income. In our series Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.
I’ve been told I share too much online. I probably do. Since I woke up with a headache on October 28th, 2013 that’s never gone away, I’ve posted many of the details of my ongoing journey with chronic pain, diagnosis, and treatment. My symptoms have increased to affect my whole body and I have become systemically ill, so I’ve continued to share the ups and downs of my situation, as well as some of the wisdom I’ve gleaned along the way.
I am careful about what I post. I have set limits for myself in terms of how detailed or graphic I get. I don’t want to make people uncomfortable, and I try to maintain compassion when others react to my story, whether they are medical professionals, friends, or family. Above all, I strive for a positive spin. That’s just inherently who I am. I need that for myself, as much as I hope to help others stay positive as well.
Still, I have made a conscious decision to be fully open and authentic about my journey with chronic pain online. Even when it might be off-putting to some. Even when I worry about what people might think or say about me, what it might mean for future personal or professional relationships. Here’s why.
I am helping myself and others.
First and foremost, sharing about my chronic illness online began as a personal coping mechanism. Chronic illness is hard and isolating. I go days, and sometimes even weeks, where I am unable to get out of the house, or even get out of bed. I spend a lot of time sitting in waiting rooms and on the exam table. I get lonely.
Furthermore, chronic illness and pain are so misunderstood—and not just by the people in my community. I’m talking about medical professionals. I haven’t always felt supported and validated by the people positioned to diagnose and treat me. I’ve learned that, because of my many uncommon diagnoses, I am fighting an uphill battle every time I see a new doctor who may or may not have even heard of my symptoms. This just adds to isolation.
Also, posting online is easy. I need people to understand what I am experiencing and what I continue to go through, but sometimes it’s hard to have to talk about it over and over again in person. But when I post online, I can still engage with people’s comments and feel supported and less alone in my struggle. Casey O’Brien, a writer and journalist with chronic illness, writes that, “It helps me feel less alone and find connection with other warriors.” I have also connected with so many others with chronic illnesses—all incredible people I might have never met otherwise.
More than that, chronic illness has become a part of who I am. There’s no denying that.
My life has been greatly impacted by it. I have always strived to be real and vulnerable on social media, and discussing my health lets me do that. It would be easy to try and hide it, to feel ashamed or embarrassed by my pain and the way it has affected my life. But by being open online, I declare that it is a part of me that I don’t have to keep secret.
I also believe that posting helps others in the same situation; it’s even become a part of my professional identity as a writer. Chronically ill blogger Rhiann Johns says, “I started to write in order to connect with others in similar circumstances to my own, as well as raise awareness of what it is like to be ill and live without a diagnosis… Now I receive comments on my blog from others thanking me for eloquently putting into words what they are going through… It makes it all worthwhile.”
Being able to tell my story openly and knowing that others find comfort in my experiences is incredibly meaningful for me. Not only does it prove that my experiences matter, that I matter, but it proves that I can also inspire others. It’s something positive that has come out of all my struggles, something I can hold onto and remind myself on even my worst days.
Social media has also allowed me to teach others about what it’s like to live with a chronic illness.
Kerri Kijewski is a freelance writer and blogger who writes about chronic illness. She explains, “I was born blind, but I have chronic kidney disease and chronic pain. I write about all of these because the world is made up of all kinds [of people], and we all deserve to be heard… There is far too much silence [and] shame out there, and plenty of misinformation to go around. Those of us who know because we live it should write about it.”
It’s inevitably difficult for someone who hasn’t experienced chronic pain or illness to know what it is like to live this way every day. Advocating for ourselves is a challenge, as we are often met with doubt and even suspicion by the people in our lives—whether it be friends, family, or even medical professionals.
Emily Suess, a freelance writer with brain cancer, explains, “We don’t just fight our diseases, we fight antagonistic doctors, unbelieving family, and often (in the U.S.) outright denial of care… The more I share, the more others are willing to share. That sharing is what, bit by bit, will move us away from social stigma and other hurdles toward a better standard of care for the chronically ill.”
I have had so many experiences in my personal relationships and medical care that could have been greatly improved if the person I was interacting with had a better understanding of what I was going through. By talking openly about my life and condition, I can contribute to this destigmatization and help to make the world just a little easier for people like me.