The Mighty Launches Its First Condition Guide
Before I joined The Mighty, I worked for a large digital health publisher overseeing the site’s Crohn’s disease content. I edited hundreds of articles about Crohn’s and inflammatory bowel disease (IBD).
I thought I knew everything there was to know about Crohn’s, but there was one thing I didn’t know — that I had it.
I was diagnosed with Crohn’s disease three months after leaving that job. When I saw my new gastroenterologist to discuss my treatment plan, we spoke about the disease like colleagues.
“Corticosteroids,” I told him. “That’s the first line of defense, so I’m guessing we’ll start there.”
He smiled, nodded and asked, “You know so much about Crohn’s, how could you not know you have it?”
That question bothered me for years. The answer, however, is quite simple.
Crohn’s is defined as a disease that has periods of remission. The disease flares or is quiet. I’d felt sick since my teens with various bouts of bleeding, consistent pain and digestive issues. Until the big flare that landed me in the emergency room, there were very few fluctuations. Even now, when I am technically in remission, I still have digestive pain.
This distinction may seem nuanced, but I’ve never seen it mentioned anywhere. At least, not in the articles I’ve edited. When I spoke to the people with IBD I’ve met in my career as a journalist, I asked them if the disease is as black-and-white as is painted — disease or remission. Every single person I asked said they’ve yet to return to how they felt before their diagnosis. That remission is murky.
Approximately 72 percent of internet users say they’ve searched the web for health content. Most of these searches are to learn about a condition they or someone else have.
There are a lot of authoritative health websites with great information you can trust, but they are all missing one key thing: the patient experience.
The Mighty has elevated the voices of those living with illness and disability since its conception five years ago. While personal stories are integral to our understanding of disease and disability, they do not replace the expertise of medical professionals nor can they compete with all of the encyclopedic health information available online.
That’s why The Mighty is launching a new initiative that makes health more about people — information that combines the expertise of both the medical and patient community. The Mighty’s Condition Guides feature the perspectives of all different types of experts — from researchers whose work focuses on understanding the disease, health care professionals who’ve dedicated their lives to treating the condition, and those living with it. To promote accuracy, each guide has also been medically reviewed.
Our first guide is for a condition important to The Mighty community: fibromyalgia. We have more guides on the way (Ehlers-Danlos syndrome, borderline personality disorder, endometriosis, multiple sclerosis are next up) — and hope to eventually have a comprehensive resource for every condition out there.
For our first guide, we surveyed 13,997 people diagnosed with fibromyalgia about their symptoms and experiences. Our questions covered topics such as: how many years it took to get diagnosed, whether the condition affects the ability to work and treatments people have tried as well as which they found most successful. We also asked people living with the condition what’s missing from other content out there to best address the community’s needs. We worked with patient advocates, nonprofits and peer-reviewed research to select medical experts to interview. The guides are living documents. That means new research and data will be added when relevant, so be sure to check back for updates.
While the guides are focused on evidence-based medicine, they also discuss natural remedies and other therapies those surveyed say they use in their care. And because chronic illness and mental health issues often go hand in hand, we also talk about coping with your diagnosis.
We hope these guides will help you and your loved ones on your health journeys. There are many barriers to accessing care. There shouldn’t be barriers to quality information.
If you are a health journalist, patient advocate or medical professional who would like to use our content or research, we’re happy to collaborate. Send an email with your request to [email protected].