Feelin' Like I'm 80: Juvenile rheumatoid arthritis
When you hear the words “rheumatoid arthritis” your mind usually wanders to a couple obvious thoughts. What comes to mind is usually an image of aged crippled hands, an old man’s voice complaining about the weather, and 80-something year olds daydreaming of the warm, dry Arizona climate. Not many people’s minds will wander in the direction of children, however arthritis is more common in adolescents than you might think.
Juvenile idiopathic arthritis, also referred to as JIA or juvenile rheumatoid arthritis, effects about three in every 1000 children and teens in Canada. JIA is an autoimmune disorder that effects the joints, causing them to become inflamed and thick with fluid, therefore not allowing normal joint function. Symptoms of JIA include swelling and inflammation of the joints, stiffness and pain, slower movement and restriction of movement, and as it is an autoimmune disease, a weakened immune system and the higher chance of developing a related autoimmune disorder. It is possible to outgrow this disease by the time your body stops growing, however most patients, myself included, will have it for the rest of their lives.
My experience with arthritis has been a pretty lucky one. For the first few years of my diagnosis around ages 5 to 7, I had pain. I was easing into new medications and discovering the new way my body needed to be treated and how it worked. But after those first few years, my real only relationship with my disease was the injection I got once a week and the only negative affiliation with it was the nausea I dealt with as a side effect from the injection. My pain levels were incredibly low and sometimes non-existent entirely, and remained this way for the majority of my life.
About three years ago was when I discovered what my disease really was for the first time in my life, despite having it for almost 20 years. Don’t get me wrong, over the years I had definitely endured pain. I had flare ups where it felt like my whole body was on fire from inflammation, and if I had overdone it playing basketball I would pay for the trauma I’d put on my knees. But the difference with those instances were that I knew there was an end to the pain in sight, so it didn’t seem so bad. Generally if I got a flare up it would last 2-3 days up to a week, and then it would be done and life would resume as normal. But when my medication stopped working for me in 2014, that’s when I really began to understand my disease, and it turned out it was a lot more difficult to deal with than I had once thought.
The worsening of my arthritis happened gradually. At first I remember the feeling of my joints being more “present” to me than they ever had been before. Like, when you don’t have any reason to, you don’t specifically notice any individual part of your body. But I can remember becoming more and more aware of my individual joints as they flared over time. I didn’t think much of it at first as it began in the joints that I had always had problems with, however sooner rather than later joints that I had never had issues with in my entire life became more painful than the ones that I’d had arthritis in for almost 20 years.
When I got to my worst point, my arthritis was active in over 20 joints. Specifically, my toes, ankles, knees, hips, spine/neck, shoulders, elbows, wrists, fingers, and jaw. Noticing my arthritis moving into new joints was probably the worst part of the entire process, as my whole life I’d only ever been active in about five joints. It was hard at times. I had a lot of breakdowns, I called my Mom crying a lot, and I missed work a lot. I had to stop doing things I loved, like going to the gym and regularly practicing yoga. And every day things became difficult at best, near impossible at worst. Things I never had thought about before like opening a jar, sitting down onto the floor, twisting a doorknob, pulling a shirt off over my head, or getting in and out of my car all became some of the most painful things I would have to do each day. During this time when things were at there worse, it was really difficult to stay positive despite my optimistic nature. I guess no matter how optimistic you are, there’s something real shitty about having to get your roomie to help you up off the toilet when you’re 23, ya feel me?
During the spring and summer of 2016 I tried out new medication for my arthritis that did nothing but make my condition worse. Trying new meds is a tough time when the main symptom of your disease is chronic pain. I remember being so excited to finally get on a new medication that was going to help me, starting it, waiting two to three months for it to kick in and help me, only to find out it had worsened my disease and start the process all over again. Not to mention, there is a real lack of compassion in the medical community when it comes to pain. What I’ve noticed in my experience with chronic pain is that medical professionals often feel that they understand your pain better than you do, or know how your condition effects you individually better than you do. Pain is hard, because you can’t see it or hear it or feel it. You have to simply rely on the information given to you by the person doing the actual suffering. And a lot of doctors seem to underestimate that despite having no physical comparison to what you are actually dealing with. It was tiring time, to say the least.
Finally in September of 2016 I started a new medication that began helping me and decreased my pain a great deal. I’ve been on this medication for almost six months now, and the change in my day-to-day abilities is crazy. I can remember the joy I felt when I began to realize I could get up out of a chair without having to push myself up with my hands and arms, or get myself in and out of the bathtub in less than five minutes. Flash forward a few months and I am now finally able to do yoga again after three years and am going back to work in a few weeks after being off for months. Things have definitely continued to get better and better and slowly but surely I am feeling more like a human every day.
I’ve gained a lot from going through this tough time, like learning to not be ashamed to ask for help when I really need it, and realizing how important it is to always put your health first, no matter what. It is okay to take time to rest, if rest is what you need, and it is okay to take a step back, if that is what you need. These things took me a while to learn and accept, but once I did my healing became so much easier on me, mentally and physically. Listening to your body is so important, and I believe nothing is more crucial in any type of healing process.
There is still a long way to go in terms of improvement with my arthritis, and unfortunately I don’t think I’ll ever be as lucky and pain-free as I was before this change in my disease. But I’ve gotten to a point where I am okay with that and have accepted that this is something I will deal with on a daily basis for the rest of my life. Knowing how bad things can get with this disease, I will be extremely grateful if the pain I deal with now on a daily level is the extent to which I have to endure it.