Finding Helpful Medical Information in the Strangest of Places
Social Media site Reddit may have recently helped some small-time investors get rich on GameStop stock and featured good-humored Manscape commercials with Tampa Bay Buccaneer’s tight end Rob Gronkowski. But Reddit very effectively serves other constituents, too, I’ve learned. When it comes to health and well-being, Reddit is a comfortable place for ostomates like you and me and the family and friends who support us to ask questions and provide encouragement as we settle in and live each day with our ostomies.
In our information age, people are looking for all sorts of content. Ostomates, and others who have encountered a medical situation that’s changed their lives, want to engage in conversations that go beyond the medical speak of the doctors and nurses who have been instrumental in our recovery and disease management. No disrespect is intended to the medical professionals, many who have saved our lives and shepherded us into a pain-free existence post-surgery. But a lot of times when we speak to doctors and nurses, they hold tight to their particular disciplines, practices and points of view about our condition. Their talk is very clinical. And because they haven’t lived it, they don’t—really couldn’t possibly—understand everyday life as we now know it. Sometimes, too, and again I say this kindly, they sound sorry for us when sorry isn’t what we need. Inconvenient? Maybe. But sorry? No, because we’re no longer living in pain.
Real Talk: Life as We’re Living It
But Reddit talk is real, experiential and life as it is. We can see and hear others wearing an ostomy write about the challenges and the triumphs we’re experiencing on any given day. That straight talk is tremendously helpful. Recently, someone was posting questions about an unsuccessful experience he was having from the moment he entered the hospital to the time the staff sent him home. One post in particular caught my attention because he spoke about his troubles with a specific issue. I’d experienced something similar and wanted to weigh in with support. Here’s pretty much what I told him:
You're only one week in, and I want to assure you that it gets easier. You need to give yourself some time. It takes a while to really familiarize yourself with what's happening. It took me six months before I was even comfortable enough to leave the house. Now, I hardly think about it at all. Try and remain positive.
He really appreciated my post, and that made me happy. But here’s something else. As much as that helped him, providing those comforting words helped me in a couple of ways. First, I helped someone just starting out on his ostomy journey. Second, as I told my wife, Michelle, it elevated me tomade me feel like a veteran ostomate for a few minutes. status.
Just the other day a person wrote in on behalf of their “dearest human” who was soon to face surgery. What could be done, this person asked, to give him a basket of things that would calm him and make him feel more comfortable. There were a ton of suggestions…anything from getting a person to clean the house and walk the dog to paying attention when he says what he wants/needs to eat. Another person suggested a detachable shower head to prevent the adhesive from separating from the skin around the stoma (that was a unique one and a really good tip). Still another suggested ear plugs and an eye mask to drown out the noise in the hospital.
Something for All Ages
One funny thing about reading and posting on the Reddit site: I assume that most of the people I’m talking to are in my age group…my brain just naturally pulls them into my same-age bracket. But then when they reveal a little piece of personal information, I realize that this person has been dealing with an ostomy for 30 or more years. That hits home. On the most practical and personal level, I say to myself: Well, if they have lived with an ostomy for all these years, I can do it too.
But in a more global sense, it says something good about social media and the way it can unite and common denominator so many people with different backgrounds and stories. In addition to unity, which we hear so much about these days, it’s a reminder to be open to walking in each other’s shoes. Say for example, intimacy. If you’ve been married for a long time, intimacy post-surgery may not be an awkward issue for you. But if you’re 16 or 17 and soon to head off to college or out into the world, that may be something you would focus on and worry about.
The other nice thing is that non-digital natives are finding benefit from these platforms. If they’ve been an ostomate for many years, they initially lacked access to a larger ostomate support community. But now, they’re comfortable using it. As the saying goes, it’s never too late. Even more, it’s unifying.
Lessons and Empowerment
One other thought about social media. Many ostomates post on Instagram, and in line with that site, there are a lot of photos. Some of them are graphic. While they’re not necessarily the kind of things I’d post, I really admire those who are posting photos of themselves with their ostomy. They’re bold and revealing. I give them warrior status as many of their posts describe them, and as warriors they bring an extra dose of normal to all our lives.
Who would have thought that in a world with so much medical innovation, we’d be heading to Reddit and Instagram, even to Facebook? It’s these sites that empower us and in ways that go well beyond our initial worries body image. They ground us, calm us and help to rid us of our fears and insecurities. In fact, they help us live our best lives and understand that the best is yet to come.
If you’re interested in learning more about Ostoh and how it might increase your comfort; email us at hello@ostoh.com or use our contact form. Our goal is to make your ostomy life easier and make you feel what it means to be yourself.