All the Meds I've Loved Before
When I was first diagnosed with Crohn’s Disease in 2010, the first emotion that swept over me was one that might surprise you: I was relieved. As an eighteen-year-old who didn’t have any experience in the medical world aside from watching a few errant episodes of Grey’s Anatomy, a diagnosis felt like a positive thing. It meant that my months of suffering were going to come to an end and the doctors were going to cure me. Right?
Wrong. Little did I know then, I was in for a roller coaster of different treatment options that would all manage my disease, but never cure it. Over the course of the intervening years, I’ve tried a number of different options to get my symptoms under control, from a low-dose of pills to a high-dose of hell-raising steroids and everything in between. Some have worked better than others, and others have worked pretty well for a time (until I build up an immunity to their magic and have to find something new).
Switching meds can be a scary experience. The first time a doctor proposed the idea of changing over from pills to a biologic infusion, I nearly laughed him out of the room. I felt okay –– or at least what I had normalized into meaning okay –– and the idea of having to go to the hospital in regular intervals and get hooked up to an IV just to be pumped up with a bunch of antibodies I can’t pronounce sounded like something out of a sci-fi novel. It wasn’t a life I wanted.
But sometimes life doesn’t care what you want, so when I became too sick to eat, I finally relented and started on a biologic. Once a month I wake up and instead of heading to my office, I head to my infusion center. My stellar nursing staff hooks me up to an IV as I sit in a comfy recliner and read a book for an hour while the medicine does its work. All in all, it’s not the nightmare I thought it would be –– it’s just a new routine. And facing my fears and trying the new treatment, even when it felt scary, has paid off in spades. I started the new meds almost 2 years ago. At that time, I was in constant pain and I could barely eat. I almost never left my house, and my fatigue was so bad I was sleeping for 16-stints and still waking up exhausted.
Fast-forward to two years later and I can live life (semi)normally again. I can meet friends at a bar, and go on vacation, and occasionally eat raw vegetables! Sometimes I can even stay up past 11 PM. All of this probably sounds mundane to healthy people, but the version of me from 2 years ago would’ve killed for this normalcy. And I know that without this medicine, I wouldn’t have it. My quality of life would be nil.
In all areas of life, trying something new is scary. You have to jump off the proverbial cliff and hope that you’ll wind up okay. But sometimes that leap is worth it. Whether it’s a new medication, a new doctor, or a new clinical trial that might change the game and give you your life back, it’s worth looking into. Luckily, education is your best weapon against nerves. Your doctors and nurses can tell you all about the new med you’re scared to try. There are whole organizations dedicated to putting information (and therefore power) into the hands of patients. Clara Health is one awesome group whose sole aim is to help patients find the perfect clinical trial. They’re there to help make taking the leap less scary –– they chat with patients through the whole process, easing concerns and helping you to make the smartest decisions. If you’re not a PhD, sometimes it’s reassuring to have someone around to demystify things a bit.
I wish I had groups like that around when my doctor first suggested trying something new all those years ago. Maybe knowing that I had other patients and really smart people backing up my care decisions, I would have been less afraid to make the big, meaningful ones. All I know is that next time around –– whether it’s a clinical trial, or a new pill, or whatever the next frontier is after biologics –– I won’t take the easy way. I’ll challenge myself to commit to the treatment that’s best for me, even when it seems scary. That’s why I’m partnering with Clara Health to do some advocacy work. As a patient, I feel the need to speak up and help erase some of the mystery around the way we treat autoimmune diseases. Access to education is crucial, and we need to encourage new ways to get that information out there.