Usually, Laurie and I call out specific articles or essays we think are notable, and try to add our own insights. But a few weeks ago, in the process of trying to find a specific article for this blog (which turned out not to be usable), I spent a bunch of time on The Mighty and so this time I’m calling out a whole website which our readers might find useful.
The Mighty describes itself as “a digital health community created to empower and connect people facing health challenges and disabilities.” They claim over 2 million registered users, with many more joining every hour, and they count more than 90 million shares per month. I have no reason to disbelieve any of this and yet, even though disability is one of the topics I blog about regularly, they hadn’t crossed my radar–which just goes to show you how vast and dispersed the internet is.
On their front page, before you get to the vast array of specific topics, they offer three things:
- A “check in with me” volunteer operation that streamlines requests for daily support — and supporters
- A “rare disease” forum, which looks invaluable for people who have trouble finding someone (or many someones) who face the same, similar, or related challenges
- A “52 small things” forum which offers weekly doable goals for people with disabilities (obviously, participation is completely voluntary)
What struck me about the site as I was browsing through it was the variety of people, postings, and attitudes. They publish a lot of determined cheer, sometimes of the flavor that makes me (not a disabled or chronically ill person) grit my teeth. They publish a lot of success stories, almost always qualified by the reminder that the writer’s success story is not an entry in a competition. Part of The Mighty’s culture seems to be that tiny daily successes need to be celebrated, but not at the expense of honesty, or a willingness to acknowledge the gravity of life’s failures and challenges. They publish a significant amount of very practical advice requests and responses; one recent example is “ISO Wearable Heart rate monitor w/ alarm.”
What always catches me, though, are the personal stories: I have this problem and I have learned this thing, and maybe it will help you. Here, as one example, is Clavedia B., talking about her multiple sclerosis and what support groups do for her:
Going to group meetings is one of the best ways to feel supported as I manage my condition and come to terms with aspects I can’t control. I don’t find the support groups boring any more than working in my garden is boring. In fact, if the only reward for gardening was to see flowers or taste fruit, I could go to any flower shop or supermarket. Part of the satisfaction is just being patient, watering the plants, and overcoming the feeling that I’m in a hurry to get somewhere.
In a similar way, there’s no urgent goal in a support group with people who have relapsing MS. I try to listen with patience and appreciation as people tell their stories or ask their questions. Giving up that sense of urgency, I sometimes hear stories that move me as much as anything I see in my garden.
I love the gardening metaphor, which I expect I will use in the future. Clavedia goes on to discuss how she took control of her own treatment, found a protocol that works for her, and politely strong-armed her doctors into following her lead.
Another example might be someone describing their day and how their condition affects it, or dissecting the challenges of parenting a disabled child, or reporting a rude comment, or any of a host of other possibilities.
The Mighty is fairly pushy about wanting visitors to join (joining is free), and like any open site, it will certainly contain content that you disagree with, or find irritating, or don’t care about. At the same time, I haven’t run into any other place on the Web with such a vast array of practically and emotionally supportive information and good feeling. If you have any kind of chronic illness, rare disease, are a caregiver for someone who does, or are simply interested in the stories of how people live with various challenges, you might want to check it out.
And if you know other comparable resources, for disability or any other marginalizing factor, please share in comments.