When you are disabled or chronically ill, you are often denied control of your own narrative. Popular culture can treat you as invisible, except as a rote “inspiration” or–worse–something to be gawked at. Too often, then, any voice that disrupts the “status quo” or diverts from what is “conventional” is lost or even actively suppressed.
That’s why, for this week’s Community Round-Up, we asked Folks’ followers: Why is it so important for people with chronic illnesses or disabilities of any kind to tell their story? What’s lost when they don’t or when their voices are mediated or filtered?
Our experiences are so often medicalized, judged, and evaluated, but disabled and chronic illness people have lives as complex as any other humans. What gets lost when we don’t speak for ourselves is the beauty, dignity, humor, and urgency of our daily lives. We are the experts in living our lives and navigating our challenges.
Education is the reason why sharing our stories is so important. When it comes to chronic illness and disability, we are the best teachers. Not doctors, not “experts,” not talking heads, or any kind of healthcare provider (unless they are chronically ill or disabled). We are the ones who live with our illness every single day. We know what works, or doesn’t work. We know what elevates our pain and have a better idea of how to treat it, even if we don’t fully understand it. The reason why so-called experts have the ability to speak for us is because many of us choose to suffer in silence. We can’t be silent. We need to be willing to speak and tell our stories for the benefit of ourselves and our Spoonie siblings.
Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.
When things stay hidden, they are easily forgotten. “Out of sight, out of mind,” right? By sharing our stories, we’re demanding to be noticed. We’re refusing to be hidden, pushed aside, or forgotten. And we’re demanding that our needs be met while normalizing our normalizing our existence. We aren’t shameful secrets. We’re human beings and we deserve to be seen and heard in all spheres.
Is it “important” for such people to tell their stories? Perhaps. Probably. These stories wipe away what Virginia Woolf called “the cautious respectability of health,” and remind us that we are fundamentally alone with our bodies. Polite society prefers to ignore that relationship, and sick/disabled people are uniquely suited to break the silence. Having the temerity to do so educates the healthy and makes sick/disabled people feel slightly less alone.
Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.
People who live with a chronic illness must share their story. We can’t expect others to understand what we go through on a daily basis if we never tell than. We can’t expect things to change if we keep our stories hidden. Change will never happen if we don’t open up and share our daily struggles.
I have a friend who works in the patient advocate community. He likes to say that he thinks of himself as temporarily able bodied. I think this is brilliant, because the truth is at some point in everyone’s lives, a part, or multiple parts of their body will stop functioning at their best. So whether you are currently ill or not, every single person can benefit from the stories and life experiences of those who are chronically ill and / or disabled. Telling our stories also serves as vital connection and lifeline to others when so often there are feelings of isolation. Growing up I did not see bodies or lives like mine portrayed in the media. As an adult I now seek out stories of those who are ill and disabled and feel seen and understood when I read these different tales. My greatest wish is for the next generation of boys and girls to not have to hunt to find themselves represented and heard.
When our voices are mediated or filtered, what is often lost is the grey matter. No individual is just one thing. When you’re reduced to either a cautionary tale or an inspiration, that is so far from the entire story. Human beings live in the grey, messy, can’t tie it up in a cute little bow, middle. The middle is where it gets interesting…
Erin N. Valor:
The loss is in the perspective from the patient’s point of view. When people don’t see a patient as having a valid issue and treat them as if they were mere children (unless they are, in which case caveats still apply), the human race loses valuable insight into the experience of living and coping with chronic disease. I have become very knowledgeable about my disease (Amyotrophic Lateral Sclerosis, ALS, or Lou Gehrig’s Disease) to the point where we can have long discussions about the latest in research into it. I have also become a resource for other patients around the world. Without my ability to communicate as I am doing right now I would not be able to do my own research and would not be able to relay that to other patients as I have been doing since my diagnosis 13 years ago.
Eric N. Valor has ALS and is a self-taught Information Technology professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He continues to push the limits of patient-led advocacy and awareness, contributing to research into a treatment for ALS, and assisting other PALS with knowledge about and coping with the disease along with helping them with communications technology. He can be found on Twitter at @surfiving.
By telling your story you can find like-minded people or your tribe so to speak. It’s healing to share your story because you will find someone out there has gone through the exact same thing as you. It’s a lot building connection, gaining relationships and support. Often times, depression, grief, loneliness can manifest with these conditions and it’s important that people reach out even if it’s to a family member, close friend, or a person you meet on the internet. Everyone opens up at their own pace so I don’t think anything is lost but when someone is mediated or filtered it can bring them person back into their shell. Nobody should feel oppressed or told that what they are saying needs to be changed. Everyone has a right to express how they feel. It’s of equal importance that with those with these health struggles really deal with the emotional aspect of the disease. Holding feelings, thoughts and ideas inside only makes the person feel worse. The only thing that would be considered lost if someone were to not tell their story is help. When we share with others we gain more wisdom, gain more clarity, and can find solutions to answers we were seeking. Lastly, without opening up to share their stories there would be a lack of understanding. There are still misconceptions and misunderstandings when it comes to chronic illness and disability, so keeping silent will only fuel this problem even more. When we make the effort to create change society limitations can slowly be lifted and we can all shift to a different level of understanding and eventually, empathy. Empathy is what is needed for people living with these health struggles and once we can shift people’s mindsets to this we will see less judgement and more open-minded conversations happening between healthy individuals and the chronically ill or disabled.