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#MakeItVisible: The Truth about Invisible Illnesses

Updated: Dec 31, 2020

Every single day, she manages to get out of bed, show up at work, and put on a performance that is literally award-worthy. For years, very few people in her circle realized that she had been dealing with chronic, almost debilitating pain, until she decided to go public and change the conversation around invisible illness.

That woman is Lady Gaga, and because she is a celebrity, people started listening, and stopped dismissing her fibromyalgia as “all in her head.” Yet, tens of millions of Americans are struggling with their own invisible illnesses, and most of us don’t understand, or sympathize, or support.

Look at the person standing next to you. Chances are good they are dealing with a chronic medical condition. Almost half of the population of the United States has a chronic medical condition, from diabetes to chronic fatigue syndrome, but barely 10% show outward signs, like using a wheelchair. The vast majority of people with a chronic medical condition show no visible signs in their daily life.

“I get so irritated with people who don’t believe fibromyalgia is real,” Lady Gaga said in the October issue of Vogue. “For me, and I think for many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”

When she was canceling concerts and delaying record releases, the rumor mill speculated Gaga was burnt out, using drugs, or getting married. It wasn’t until she went public and put a face on her invisible illness that some people began to understand and believe her.

Not all, though. Even after I was diagnosed with a Traumatic Brain Injury and PTSD from an assault I suffered in 2017. It took years of me arguing with doctors before I was diagnosed and treated. It wasn’t just the people around me who didn’t believe I was suffering—it was the medical community itself, who chalked it up to hysteria or exaggeration.

There is a long list of invisible illnesses on the Disabled World website. Everything from ADHD to Ulcerative Colitis can fall into this classification. If you look at that list and think about your neighbors, your friends, your family members, how many would check at least one of the boxes?

The first step in supporting people with an invisible illness is education. We have to not only educate ourselves, but also the people around us. The more we talk about it, the more we read and share, the more support is available.

Healthline started a campaign called #MakeItVisible to encourage conversations and education. They have a great article here, interviewing many people suffering from different conditions.

  • Ask Questions: If someone you know or love is suffering from a condition that isn’t outwardly visible, it’s okay to ask them about it. Simply asking them how they are, or how the illness is impacting them, let’s them know that you see them and their illness

  • Do Your Research: There are dozens of articles on the internet, as well as groups and organizations for specific illnesses and the broader invisible illness topic. It takes just a few minutes to read and educate yourself about the struggles of others

  • Don’t Dismiss: The worst thing you can do for someone with one of these conditions is to dismiss them or their symptoms. We don’t do that with diabetics or heart condition patients. We shouldn’t do it with any other illness that isn’t outwardly visible, whether that is mental illness or fibromyalgia.

Change happens through awareness and education. Someone you know is undoubtedly suffering right now from something you can’t see, so let’s start making the world a place that embraces and supports them. If you’re the one suffering from an invisible condition, don’t be afraid to share and talk about what you are going through. It’s only when people bravely speak up, as Lady Gaga did, that we begin to make a difference.

If you want to hear more about my journey of recovery, check out my book You've Got Some Nerve: The Battle Back from an Invisible Injury.

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