The disabled community has made huge strides in making their specific struggles more widely known and recognized. #DisabledAndCute, #AcessibilityMatters, #TheFutureIsAccessible, and #DisabledLatinx are just a few of the many hashtags on Twitter that give a glimpse into the lives of disabled folks. When many people hear the world “disabled,” they picture someone with a visible, physical disability, but not all disabilities can be seen. Chronic pain, one of the most common invisible disabilities, is incredibly misunderstood, in no small part because you can't see it. But over the past few days, people living with chronic pain have taken to Twitter with the "My Pain Day" hashtag, started by user @TheBreeMae, to show what an average day feels like when you have chronic pain, and the tweets should be required reading.
Bree Mae tells Bustle, "It can be difficult or unsafe for people with disabilities to be truthful about the magnitude of our pain.
#MyPainDay is about disrupting [...] silence." Lily Calder, a #MyPainDay participant, tells Bustle she chose to share her story about living with chronic pain because non-disabled people simply don't know what it's like day-to-day. "By sharing my experiences as a multiply-disabled woman (with cerebral palsy, rheumatoid arthritis, and mental illness), my hope is that it helps the general public be aware of chronic pain, and also that it empowers other chronically ill/disabled people to talk about their own stories with pain.”
Folks with invisible disabilities face challenges non-disabled and folks with visible disabilities do not. Employers often have a harder time understanding that someone is in constant pain if they cannot readily identify the source of the pain with signals like a wheelchair or cane.
This unfortunately can lead to mistrust and discrimination. According to researchers at Cornell University’s Employment and Disability Institute, invisible conditions were the most commonly cited in disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010.
Keah Brown, the creator of #DisabledAndCute, has similar sentiments to the researchers at Cornell. “I think people treat invisible disability like it’s something that people fake and that’s not the case at all it’s very real and very consuming,” she tells Bustle. “People believe that if you aren’t a mobility aid user then you can’t possibly be disabled, but that’s not the case. Disability is about the body and its function. It’s not as cut and dry as people would like to think. Some disabled people don’t use mobility aids, but that doesn’t mean that they are any less disabled.”
Chronic pain literally changes the way people live their lives. Many things people who suffer from chronic pain used to enjoy are simply too painful or tiring. Imagine being an artist who has to stop drawing because the pain in your hand is too much to bear. For some living with chronic pain, this is a reality.
Because chronic pain is invisible, it’s important for non-disabled folks to not jump to conclusions about who is disabled and who is not. Folks with all sorts of disabilities need extra help. There have been cases of people berating disabled people who use the handicapped parking spot because they can’t see their disability — which should never, ever happen.
"We are disbelieved often by doctors, strangers, and even the most supportive family. Being truthful can mean losing credibility, or being expected to perform our pain to prove it," Mae tells Bustle.
Social media has given those with disabilities a larger platform to highlight the daily challenges that often go overlooked as seen in #MyPainDay. “Social media as a whole has helped us become more visible because it’s accessible in a way that many things weren’t before it. I share my stories here all the time and it has helped me find an audience and helped people see experiences that they wouldn’t have access to otherwise,” Brown says. You can learn a lot from the disabled community on Twitter, and use the lessons learned to be a better ally IRL.