Hello and welcome to episode 0 of the brand new podcast Tips and Tricks on How to be Sick.
I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us. I’ll start with a few bits of background about myself and why I’m doing this podcast.
I’ve got several disabling chronic illnesses, including Ehlers-Danlos syndrome, hypermobility type, which has led to widespread osteoarthritis and joint degeneration, a primary immunodeficiency for which I am prescribed monthly IVIG treatments, and severe asthma related to that. I’ve also got polycystic ovarian syndrome, an undifferentiated connective tissue disorder, fibromyalgia, and occasional flare-ups of uveitis. When it comes to chronic illnesses, you can’t get just one, right? Before most of that list came to the forefront of my life however, I worked as a nurse, so I’ve got experience on both sides of the medical professional / professional patient divide.
When I started reaching out to the communities for my various conditions and talking to other people who struggle with the same sorts of things as I do, I found that I could help “translate” some of the things that other people were hearing from their doctors and that were tripping them up, or else help them find the best way to communicate with their doctors so that things were as clear as possible to all involved. Over time, I’ve figured out ways to adapt my life and environment to the changing needs of my medical life such that my interests and ambitions are not always shunted to the back in favor of That Thing I Need to Do Because I’m Not Like Everyone Else. Not that I never have to skip things I’d rather be doing in favor of this medical treatment or that flare-up causing me to need more rest, but it’s less often now that I’ve found some good ways to adapt.
That is why I want to do this podcast for you. It’s a common complaint I see in various social media chronic illness support circles, that there’s no convenient guide on How to Be Disabled. If you’ve lived with your conditions or disabilities your whole life, you probably have all your adaptations baked in, as it were, and you don’t think about them as much. But if you later develop a chronic illness and suddenly have disability where you used to have ability, it can be overwhelming and difficult to see just how to fit the new shape of your life into the old framework. Let me share the various tips and tricks I’ve come up with or been taught by others so that maybe your transition into Mighty Chronic Illness Warrior can be a little smoother than it might otherwise be.
Please note, however, that this podcast is substitute for neither your doctor nor your lawyer. The tips and tricks I offer are my personal suggestions and should not be taken as specific medical or legal advice, so please do not disregard what your doctor or your lawyer tell you in favor of my tips. My tips are of a general nature and I cannot know the specifics of your situation, which can and will affect what you need to do. End of disclaimer!
Please, continue to join me here every month for a different topic and set of tips and tricks. You can find us on the web at http://www.sicktipsandtricks.com, on Twitter @HowToBeSickTips, and on Facebook at SickTipsAndTricks.
(Does it feel like “tips” and “tricks” are losing their meaning as words to anyone but me?)
If this podcast is something you are interested in and you want to see more of it, please like and subscribe to us on your favorite podcast app!