Having dealt with on and off chronic pain and fatigue since the age of 14, a back injury at 17, an official fibromyalgia diagnosis at 18, and the onset of autonomic nervous system dysfunction affecting my circulatory system last winter, not to mention low-level anxiety and OCD, I’ve had my fair share of frustration with the body I was given. Sometimes, I joke that I must have come from Ikea because I just didn’t get put together quite right. And while I could go on and on about exasperating doctor’s visits and how many times I’ve been made into a human pincushion, I won’t (at least not today).
While I would love to simply wish all of these problems away, I can’t deny that there’s a lot I’ve learned because of them. I try to find meaning behind the things that happen in my life and fixate less on how much pain they have caused me and more on how they have shaped me in a positive way. So, I’m going to go through a short list of the things I’ve learned from being a little broken.
Be kind to yourself.
This one comes first and foremost. Sometimes I have really bad days, and while I want to just get on with my life, it’s generally best to relax and let my body calm down. Ultimately, it’s the most productive option, since when you’re not at 100%, you’re not going to do your best at anything. I’d much rather take an evening to embroider and sip tea while watching a Disney movie at the end of a long week and spend the next day attending to my outside obligations than try to crank it all out immediately and eventually burn out. Furthermore, you have to listen to your mind and body to figure out what they need. Don’t feel like you have to deprive yourself of what makes you feel good, just because you feel like you should for some reason.
But don’t use illness as a crutch.
Finding out that my problems had an actual explanation (or at least a name), and that I wasn’t crazy, was a huge relief. But, sometimes, I also let it get into my head a bit too much. Especially in the couple months following my diagnosis, I found myself hesitating to do almost anything because I was afraid of how my body would react. And it actually made me more miserable. I had spent so much time beforehand praying for the pain to just go away, and finding out that it never would when I was so young was crushing. But eventually, I stopped making excuses and started making goals for myself. I didn’t want to stop doing the things I enjoyed, so, rather than holding back for fear of the consequences, I learned how to pace myself and use discretion. It naturally got easier once I had gotten better at managing my pain and other problems, and I was able to stop self-identifying as incapable or too weak. Instead, I let myself feel like a badass with every new accomplishment, whether that be a new yoga pose or climbing to the tops of ancient temples in Cambodia.
Sometimes, people are going to look at you a little funny.
Maybe it’s because you’re in the waiting room for your cardiologist appointment and are the only person there under the age of 50, or you’re toting a super-loud rolling backpack across campus, or you’ve got electrodes stuck to your chest for a month, or you’re the only one willing to answer questions in class that day. There are always going to be times in life when you’ll have to stick out a little. For someone with social anxiety, like me, that prospect is slightly terrifying. But, the sooner you learn to say to yourself, “If they want to look, they can look, but it doesn’t change the fact that I have the right to do what I have to do,” the better. Once you accept that, everything, right down to wearing that bright red lipstick just because you feel like it, becomes much easier.
Do your research, but don’t let it drive you insane.
Most of us have been sucked into the black hole of WebMD at one time or another. If you’re having a problem, looking online or elsewhere for answers can help point you in the right direction, but it is not by any means foolproof. Be smart about your research—consider all of the possibilities, and narrow it down to what sounds the most like you, but never accept it as truth until you talk to a healthcare professional (or whoever holds the authority on your subject). And certainly, don’t get too caught up in trying to find all of the answers yourself. Online research of my condition has been very helpful in understanding exactly what is at work in my body (keep in mind that I was already diagnosed at this point) and finding good strategies to manage it based on what others have done. But there’s a lot you’re going to have to learn for yourself, and a lot that is, unfortunately, unknown. Plus, everyone is different, so something that works for someone else may not work for you, and vice-versa.
Be your own advocate.
I always say that my best-ever lesson in adulting has been dealing with healthcare on my own. Especially when your problems aren’t an easy fix, people will try to dismiss you, or struggle to understand exactly what it is you’re dealing with. I’ve become very good at explaining how my body feels under all sorts of circumstances, and I’m not shy about speaking up when I have questions or feel like I’m not being listened to. Being forward and making sure you really understand what’s happening or being tested at any given time will not only make you feel better assured and more confident, but it will also assert that you deserve respect. When doctors seem to think that my pretty little music-major brain can’t handle a full, detailed explanation, you can bet I’m bringing an intimidating legal pad full of questions and notes. Healthcare professionals work very hard and see a lot of patients every day, so you have to take it upon yourself to make sure all of your individual needs are met.
But you still need support, and that’s okay.
Dealing with flare-ups, aimless testing, tricky scheduling, and endless voicemails is a part of life that I have learned to handle pretty well on my own, but if I’m having a really bad day or am just generally overwhelmed, I have no shame in calling my mom or a friend to let everything out. I’m the resident expert on myself, but I don’t always have all the answers, and not understanding what’s happening inside of you to make you feel so awful can be quite frustrating and concerning. Sometimes I need that leg up to get through the week, or just to the end of the day. And, while I can hold my own in most circumstances, sometimes I have to admit that I could use some backup or moral support. No matter what you’re dealing with, and no matter how insignificant you think it is to those around you, you don’t have to go through it alone, and you shouldn’t. Finding another person with a similar problem who therefore understands what you’re going through is also incredibly liberating, on both sides, so reach out to the community and find that connection.Again, I would give a lot for all of my problems to disappear. I fantasize about a day when I never have to stop and consider whether it’s worth it to carry a backpack, try to exercise, or drink a cup of coffee, but, realistically, I’m never going to have it that easy. And, if I did have it that easy, I never would have learned how to be strong while also taking good care of myself, and I wouldn’t be able to pass on that knowledge to others. At the end of the day, our experiences, both good and bad, shape us and help carve out our path for the future. All I can do is take what I have, keep moving forward, and hope for the best.
Image Credit: Feature, Emily Wirt,1,2