With over 300,000 children living with some form of juvenile arthritis in the US, you wouldn’t think it would be this lonely; but when you are eight years old and have just been told you apparently have this disease, you can’t help but feel alone and a little bit scared. I was lucky enough to find some amazing people throughout my life that either have juvenile arthritis or who have been supportive and made me feel not so alone. When most people think of arthritis the image that pops into their mind is of someone that is old. Be it an old woman with knotty fingers from too much knitting or a man rubbing his knee which aches from years of hard work. This is not juvenile arthritis. Juvenile arthritis is an autoimmune disease that results in inflammation, swelling, and pain in the joints.
I was diagnosed when I was eight years old and receiving this life changing diagnosis at a young age, made me grow up differently and faster than other kids. Most kids, didn’t have to worry about taking pills and shots or endless doctor appointments. By the time I was nine, I was giving myself methotrexate shots every week. Although I was concerned with things that all fourth graders are such as, finding out if my crush liked me or trying to understand why we needed to know all these math terms and when would we actually use them, I also had to worry about my health. I vividly remember the day my doctor told me that there was a possibility of ending up in a wheelchair if we couldn’t get my arthritis under control. I vowed that I would not let my arthritis control me like that. For me this meant that I wasn’t going to be defined by my diagnoses. I had a friend that once told me, “We may have juvenile arthritis but it doesn’t have us”. This really inspired me to never let my arthritis stop me. Having the mind set of not letting my disease stop me from doing what I dreamed of doing, didn’t mean I could just ignore it. I couldn’t pretend that I wasn’t sick because I was. When I would decide to skip a dose of my medication because I thought I didn’t need it, it wasn’t long before I would get a flare up and could barely walk up a set of stairs. A huge part of not letting arthritis limit me was control over the disease. Making a point to take the medicine or trying new ones in hopes of finding something that would help control the inflammation and pain. I even had to make the decision of having both hips replaced so that I was able to be in better physical condition before starting college and a nerve relocation surgery was required if I wanted to continue with my education. All of these things helped me in the long run, but I also have to make many micro decisions in a day that affect my control of the disease. When your body is constantly battling itself you only have so much energy. I have learned that I need to be aware of what I choose to do each day. I know that if I go to the mall with my roommates for a few hours, I am going to be tired and sore. I know that if I try to do too much during the day, I not only will feel sore that day but the next as well. To ensure that I live my life the way I want to, I first need to make sure that my arthritis is taken care of by planning. Having arthritis doesn’t have to stop me from accomplishing anything. It may just add a few extra steps to planning for that day.
Since my diagnoses, I have reached out to others that have the same diagnose or disease as me. I learned early on that there are the physical side effects of having a disability and that there are the mental side effects as well. It wouldn’t be that hard to slip into a dark place when your body is constantly struggling and in pain. I found that I needed a good support system. I found this with my family and friends but most of all through a place called Camp MASH. Camp MASH, which stands for Make Arthritis Stop Hurting, is a youth camp specifically for children ages 9-17 that live with juvenile arthritis or with other autoimmune diseases. I can say with a hundred percent certainty that meeting others that have had the same or similar struggles as I do has changed my world. There is a comfort in finding someone that can relate to you and needs no explanation because they are most likely going through or have gone through the same situation. If I were to give someone that has juvenile arthritis advice it would be to find a similar support system. Having people that understand how big of a deal getting taken off methotrexate is or how small accomplishments like being able to put on your own socks can be. This is the reason I reach out to others through Facebook support groups and pen pals because having even one person who you can talk about to how the smell of alcohol pads make you feel sick or how the color of methotrexate makes you shiver, can make all the difference to someone.
Having a good support system helps me maintain a healthy mental state. I continually strive to maintain a positive outlook and surround myself with people that encourage me to keep going. Sometimes it is their faith in me that helps me keep going forward. To help maintain a healthy lifestyle physically it is important to stay fit. I have found that there is a fine line between working out and not over doing it. It is true that staying active is important when you have arthritis but it can be hard to want to go exercise when your body is in pain. For me I had to find a form of exercise that worked on strengthen muscles and helped improve my flexibility but most importantly something that I enjoyed doing so it wasn’t such a chore to go work out. This delicate balance is in jeopardy every day and I must make the ultimate decision of deciding what for the day is going to help me in the long run, resting or working out. I have learned to listen to my body and not overwork it because eventually it will catch back up to me.
Having juvenile arthritis has made me change the way I live my life but I won’t let it stop me. Having this mind set allows me to push through my toughest days. I do not see my juvenile arthritis as something that is a barrier for me but as an opportunity to grow and learn. The trails I have had to face have taught me to appreciate the good days and have strength to face the bad ones. My hope is that by sharing my story others with the same disease can find comfort in knowing that they are not alone and that this disease is a part of us but does not have to define how we live our lives.