Finding Your People
Once I adjusted(-ish) to the reality that I’d been diagnosed with asthma, I started trying to find people like me. If somewhere around 10% of the population has asthma, they had to be out there somewhere, right? A few months after my diagnosis, when I was seventeen, I started searching out more and more information, and trying to connect with people through online communities—people who understood where I was at, and where I was coming from.
The reality was—and still is—limited peer-to-peer (or patient-to-patient, if you will) type resources for adolescents are hard to come by—probably this is true for most adolescents with chronic disease, but it’s certainly true with asthma. I find the same being a young adult with asthma. Living in Canada, the above statistic kept rattling through my head “If 10% of Canadians have asthma, where are they?”
Through the past five years, I’ve found myself asking the same question while engaging as a volunteer, trying to work on different projects with the aim to improve asthma care in Canada, as well as globally. Resources that non-profits have are often limited—but our voices as patients aren’t limited if we choose to use them in the right ways. I started writing online with a focus on asthma in the year following my diagnosis, and slowly connected with a handful of fellow asthma advocates. For all of us, things have changed over the seven years since I started connecting with other patients online. Life priorities shift—many of us started out trying to raise awareness of what asthma looks like in our own worlds, and some of us have continued on that path more than others; some occasionally, and others not at all. Every person’s story counts, and it is what it is!
I often say, “We became friends because of asthma, but we remain friends because of awesome.” We’re more than our disease: above all, it’s great that I have a network of people to reach out to about my asthma if I need to, and who can do the same with me. But, with the majority of them… we don’t even talk much about asthma anymore, and I think that’s really cool. With these friends, asthma just flows into the conversation like what you had for dinner or your last workout or whatever—it’s just another topic.
The reality is, most people don’t perceive asthma as being a “big deal”—it’s true of many people with asthma, and also tends to be the general perception of people without the disease. That’s for good reason: historically (and currently) a lot of time has been spent trying to get the message across that people with asthma can do anything we want to. (Well, wait, are we still banned from scuba diving? Just about anything.) But let’s be realistic here—when your treatments aren’t quite working right, or your doctor’s office’s system for dealing with phone calls sucks, or it’s raining for the 6th day in a row and the humidity is driving your lungs bonkers and you don’t feel terrible but you don’t feel right, or you just have a weird question or issue you need someone who gets it to tackle with you, those “little things” add up, and it’s super important to be able to have a few people that you trust so you can get those things out of your system, and at least know that somebody gets you.
I still, after eight years, haven’t found friends locally who have asthma, who “get it” like my online friends with asthma do. Fortunately, a lot of people with asthma have symptoms so rarely, that it really is not a thing they have to think about on a daily basis. And while I coexist pretty well with my asthma, sometimes there are days that I just have no idea how I can put up with this for another 5 or 6 decades (or more). Usually I get over those moments pretty quickly, but, as much as it sucks, it’s helpful to know that there are others in the same boat that have my back, and understand what I’m dealing with.
I’ve gained friends—and best friends!—because of my asthma. We may not live close, but we are some of the closest friends! We’ve met up on our travels, we’ve met up to travel, we’ve spent hours on Skype or Google Hangout or FaceTime or even the old school phone—many of them I connected with a year or two after my diagnosis, and we’ve sifted through each other’s successes and struggles together for more than five years now. My friendships with others with asthma are really important to me—but, while most of us want to see and work to see the asthma world change, our friendships are about a lot more than asthma!
Have you ever gotten "moon face" as a side effect of prednisone?