Everything hurts.
I have probably uttered this phrase more times than any other in the last eight months (though "I'm sorry" and "I forgot..." are close seconds). It is something I honestly never could have imagined. I knew chronic illnesses existed, but I often wondered about them because it seemed impossible for someone to actually be in pain all the time. Unfortunately for me and nearly 20% of Americans, it is not so impossible.
I've written and rewritten this post a few too many times. I keep changing my mind about how to go about writing this; Aspen and I started a blog because we wanted to share positivity and inspiration, so I don't want to be whiney and negative. I worry that there's a lot of potential for this post to come off very self-absorbed and complainy (I'm pretty sure that's not a word, but I'm making it one), so I want to start with a quick explanation of why I've decided to share this post.
First of all, selfishly, I wanted to take control of my story. I'm sure a lot of people have their own versions of it pieced together from information they've heard from my parents, Aspen's previous blog posts, or my incessant complaining. While I know everyone has the best of intentions when sharing details about me, I sometimes think those details get misconstrued a little bit. Secondly, as I mentioned above, I used to not think chronic pain was even possible, but it turns out that a large percentage of the population lives with it. I was certainly judgmental in the past when I had friends or family members who seemed to always be going to the doctor or feeling sick, and I can imagine it's very difficult to understand when you haven't experienced it. I hope that by sharing a little bit of my experience, I can maybe give others a little bit of insight into what it is like so that we can all try to understand each other better. Lastly, reading about and hearing from other people who experience something similar to me has truly been a saving grace over the last few months. After every disappointing test result or every doctor who implies that I am making all of this up, I feel like I must be crazy. It becomes discouraging and isolating after a while, but hearing about other people in similar situations sometimes provides the little bit of hope and motivation I need to visit another doctor or try a new medication. I want to be very clear that I'm not writing this post to complain or ask for sympathy. I know a lot of people are dealing with things much worse than I am. I simply want to share this because I hope it might make other people feel less alone, and it might help all of us be a little more understanding toward others.
I don't know exactly when the pain first started. When I was little, I was a notoriously frequent visitor to the Elementary School clinic, complaining of having a stomach ache or feeling "Disney" (because I thought that was the word for "dizzy"). My teachers informed my parents that I was probably either bored or looking for attention, which very well could have been the case. I usually was bored since I finished my work quickly, and I got much less attention than the students who needed help. But, looking back, I wish I remembered if I was actually feeling sick or if I just really liked taking naps in the middle of the school day.
The first time I remember the pain starting was in fourth grade during Jump Rope For Heart, a fundraiser/jump rope competition that our school participated in every year. While my very-athletic self wasn't generally a top competitor in this event, I had been practicing this year, and I was determined to at least not be the first person eliminated.
Quick sidebar: Let me just acknowledge that I realize most of these details are not necessary to my story and this would be much shorter if I would just get to the point. It's not my fault; I inherited my dad's storytelling skills.
Anyways, only a few minutes (or probably seconds, I don't think I would've lasted minutes) after the 2011 Jump Rope For Heart competition began, I suddenly felt this intense pain in my ankle. But it wasn't the kind of pain where you land on your foot wrong or twist your ankle, it felt like when you have a blister on your heel and you walk around in shoes that keep rubbing up against it, except it felt like that inside my ankle. I assumed I had somehow hurt it during Jump Rope for Heart; as I said, I wasn't the most athletic kid, so it wouldn't have been a stretch. I came home and told my parents about it, and I didn't think much more of it, but the pain didn't seem to go away. The next day, I came home and told my parents my ankle still hurt.
"Wasn't it the other foot yesterday?" one of them asked.
Was it? I knew I wasn't making this up; it really did hurt yesterday, and it hurt today. But maybe they both hurt and I hadn't thought of that. A few days later, I confirmed that yes, both of my ankles did hurt. And then my wrists started hurting, and then my elbows, and then my shoulders, and then my knees, and then my fingers. This was my warm welcome to the wonderful world of joint pain.
I don't think my family thought much of this at first. I was a teensy bit dramatic when I was l little, and I was also prone to often being sick or injured. But the pain never really went away, and I began to notice that my joints would get "stuck" a lot. I learned that popping or cracking them would relieve that feeling a little bit, and I developed a habit of constantly popping my joints. I didn't know how to explain what it felt like, so when I started going to doctors for it in fifth grade, I would tell them that I needed to pop my joints otherwise they would get stuck and I couldn't move them. As an adult, I now understand that what I was trying to say was that my joints were stiff and they would often pop and crack when I tried to move them, which is a common symptom of rheumatologic issues (and getting old, but I was only nine). No offense to the doctors, but I am kind of surprised that they didn't gather that from my explanation. A few doctors ran a few tests, but I didn't have any concerning results, and since my joints weren't red and swollen as would be expected with some kind of arthritis, they decided that I had Obsessive-Compulsive Disorder. I needed to go to therapy to learn how to stop thinking that my joints would get stuck. Therapy is great, but it didn't exactly cure my stiff joints.
I learned a few months ago that I was also diagnosed with hypermobility and chronic pain syndrome at the time, but no one in my family ever remembers being informed of that diagnosis, and it wasn't in my medical records anywhere. It seems strange to me that I was never referred to any sort of treatment for those diagnoses, but I also have to laugh because, aside from my double-jointed knees, I am just about as far from being double-jointed as a person can get.
I started cognitive behavioral therapy for my apparent OCD about three years after all of this started; I was a freshman in high school when I had my first session. I did it for a couple of months and was given exercises to help distract me from popping my joints, like squeezing something really tightly or tensing the muscles around my ankles and feet. If you've ever had joint pain, you know that squeezing and tensing are the opposite of helpful. That's why they make arthritis caps on Advil bottles; it is literally impossible sometimes to squeeze the cap. I don't mean to blame any of the doctors or put down any type of treatment; I know they were all doing their best, and I imagine these treatments are very helpful for the right condition. Really, I blame myself for not being able to properly explain how I felt and what I needed, but I was also just a kid and I didn't have the vocabulary to describe it. I will admit that I am not the biggest fan of the rheumatologist who told me that my joint pain was all in my head because that led to many years of me ignoring the problem or being mad at myself because I wasn't trying hard enough to make it go away. It's easy when I have bad days now to think about how much better things might be now if I had started the right treatment five or ten years ago.
After I got that diagnosis, I began ignoring my joint issues as much as I could. I stopped going to doctors or complaining about the pain. I tried to stop purposely popping them, but they were still creaky and crackly, which led me to believe I had damaged them forever by popping them so much. I don't remember the joint pain being as prevalent in high school, but it was always in the back of my mind.
By that point, I was also dealing with terrible, debilitating stomach pain that would appear seemingly randomly but would make me miserable multiple times a week. This lasted all throughout middle and high school, but I determined that I probably just had IBS and there was nothing that could be done about it. I would occasionally bring it up to a doctor, but they usually agreed that it was IBS, and I was terrified of having my blood drawn, so I never really got any tests done to rule out anything else. I also began feeling very fatigued in high school; I remember being very afraid the summer I turned 14 that I was becoming a lazy teenager because I was suddenly sleeping in until 9 or 10 in the morning and still often needing to take a nap during the day. I hate naps (I think the name is part of the problem, I would like to petition to rename them sleepies or daytime rests), and I hate sleeping in late, but both of these things became a common occurrence. I rarely told people, even in my family, about this because I was embarrassed about how lazy I was. I never even thought of it as fatigue or associated it with any of my other issues until I got to college.
After my OCD therapy, I never really thought much about my symptoms. Well, that's not true, I thought about them all the time because they rarely went away, but they weren't that bad, and I just assumed they were normal. I would get throbbing headaches, but headaches seem like something that everyone gets all the time; that's what Advil was invented for, right? Lights and noise were sometimes so bothersome that I would need to wear sunglasses when driving at night because the headlights and street lamps hurt my eyes too much. Stomach aches would keep me up all night or cause me to miss school. My joints cracked and popped like a bottomless bowl of rice krispies cereal. I got these random chest pains that I can only describe as feeling like my heart was stopping. I had constant, intense musculoskeletal discomfort that simultaneously felt like I needed to run around and like I couldn't move. But these things were just normal to me, and I thought everyone experienced them. I am lucky that they were all mild symptoms, and they didn't really get in the way of my normal life (yet).
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