Parallels: In Good Company
Awhile back, a friend with type 2 diabetes (T2D) and I exchanged guest posts for one another’s blogs—in both posts, from our own perspectives, we paralleled the similarities and differences life with T2D and asthma. There are more parallels than one might think. Both the ePatient and patient blogger communities are vast, and I really believe that by learning about each other’s different healthcare experiences, that we benefit from stepping outside of the communities built around our own diagnosis—and that, if we’re that type, we can combine our experiences for the better. I recently read that a third of American live with a chronic medical condition.1 Asthma, COPD, diabetes, heart disease, cancer, liver or kidney disease… and so on, all comprise this estimate.1 We often isolate ourselves into our “communities”—our groups of people who are like us, who understand our exact circumstances—or close to our exact circumstances—and engage in the same daily routines and chores that we do with that same diagnosis.
Friends who Understand "chronic Life"
I’ve formed some amazing friendships with people who understand this “chronic life”. They’ve opened my eyes not to how things could be better or worse, just how things could be different. There are things I’ve picked up on from different groups of patients that I am sure have made my asthma life easier. But alongside that, we create a stronger group of patients as a collective who simply understand each other, that fight for each other, and that educate people without chronic disease on one another’s behalf. It’s really cool to me when I share something about asthma and someone says “Oh I didn’t realize that ”but you know that they are probably sure to remember it—and often, they’ll trade back their own nuggets of information.
No matter our diagnosis, we’re fighting similar battles: insurance or prescription coverage, wait times, the annoyances of doctors, the questions that arise with navigating the healthcare system. If we want these things to change, we are absolutely stronger together—we are beginning to realize that. In November, I attended an event called Drug Pricing in Canada: Mobilizing Patients to Action. Not only were multiple patient communities involved, it was hosted by three Canadian patient-centered organizations—the Schizophrenia Society of Ontario, the Canadian Cancer Survivor Network, and the Save Your Skin Foundation. Talk about collaboration and breaking down the walls between patient groups. Over coffee upon my arrival in Toronto for the event, I told my friend Jamie about this event—Jamie has type 1 diabetes, and she said, “If you hear anything or want more information about coverage for insulin pumps and CGMs [continuous glucose monitoring systems] text me!” The cool thing about this is not only does Jamie’s voice get added to a conversation that she won’t be present for, but I learn something new and bring up the needs of another patient group that I will only soon discover if they are represented at the event. By learning about each others’ needs, we can also help advocate better for all patients, not just ourselves. In my eyes, advocacy is not just about me: it is about making things better for people who come after me, too.
I believe that we can absolutely all learn from each other—even technology built for one community may be able to be modified and used for another different patient community. Even if it’s things as simple as “This is how I remember to take my medications,” or simply the feeling of people not “getting it” other patients might not be in our same boat, but they’re still out on their own adventure on similar waters. If you do not have friends with asthma nearby, consider who your friends are who may live with another medical condition that may have experiences that resonate to you (or vice versa!). You might be surprised about what you learn—and how much you actually have in common despite being in different circumstances.
Do you get muscle cramps caused by your asthma medicine?