The summer after my freshman year at UW-Madison, I was home for the summer, with about a week to go before a scheduled foot surgery, when I found myself sleeping up to 20 hours a day and being in extreme pain even when laying down. This prompted me to go to the doctor, to see if I was sick with anything, worried about not being able to have my foot surgery on the scheduled date. It was then that the blood work and exam led the doctors to my diagnosis of rheumatoid arthritis. At 18, I like most other people, thought only older adults got RA. This was the start of my own education process, learning about my autoimmune disorder.
To first help deal with my disorder, I learned as much as I could about RA. This meant researching how this would affect my body and learning about the possible medications. Knowing as much as I could about RA helped me to be able to help educate my family and friends to understand how RA affects me. Most people first assume that since RA has the word arthritis in it that it is the same as osteoarthritis, meaning I have one bad knee or something like that. However, I usually explain that it is first and foremost an autoimmune disorder, which affects my joints. This helps to explain my fatigue or physical limitations at times.
Finding a good doctor who can help get your medicines right was one of the most important pieces to help cope with my disorder. For about a year and a half, the medicines we were trying were not completely helping my symptoms. After finally finding the right combination of medicine, I am happy to say that I rarely have any joint pain or swelling of my joints. This allows me to do one of my favorite things, go to the gym and lift weights. Working out has been a powerful tool for me, as it helps me feel strong and healthy, which I sometimes did not feel when having flare ups of my symptoms. Since my joints are at risk, I no longer run or jump, so I’ve found that lifting weights is the best thing for my body. I am able to protect my joints but still get a very good workout.
Some difficulties that I’ve found have been mainly small tasks that I wouldn’t have guessed would be made harder due to my RA. I love to bake and cook, an activity that I spent time with my mom doing as I was growing up, but I never would have thought that this would be complicated by my RA. Opening jars and cans are very tough on my hands, as they require a lot of gripping strength. I’ve had to find some alternative ways to help me out in the kitchen, so my mom found me a jar opener that is easy to use, as well as having some gripping pads in the kitchen to use as well. I’ve also found that even chopping and mixing some days can be difficult, so sometimes I just know that doing a lot of cooking is not my best option for that day.
When I first started on one of my medicines, I learned I wouldn’t be able to drink alcohol. Being as it is, UW-Madison is known as a very good academic university, as well as a party school. It was a change for me to not drink, but like my disorder, I slowly learned how to cope and succeed in the parameters that have been set for me. I still go out with friends, and enjoy some water. I realized that being with my friends and having fun, was a lot more important and fun than staying in and feeling bad for myself.
My junior year I was lucky enough to somehow stumble upon a wonderful group of girls to be roommates with for my last two years of college. After getting to know each other, we realized that we all have medical issues. Even though we all deal with different medical issues, it is beyond wonderful to be able to have such an understanding and supportive group of people to live with. Another support system that was extremely helpful for me was to utilize the McBurney Disability Resource Center at UW-Madison. I was able to get the official documentation and accommodations needed to be successful throughout my time at UW-Madison. It has been extremely helpful to be able to use my laptop in all my classes, as my hands are the first to feel a flare up or be sore on any given day. Writing notes for three classes in one day would be painful and impossible for me. Having some flexibility in attendance, as a flare up can keep me sleeping and/or with joint pain for one day or up to a week, has also been helpful. It is difficult to have all professors understand what RA is, or how it being an autoimmune disease can cause me to miss class if I’m not feeling well, so having documentation as well as a contact person at McBurney has been invaluable. I was very worried about my academics, but I’m happy to say that next year I plan on going to graduate school to be a speech-language pathologist.
When I first found out about my diagnosis, it was a difficult time in my life. I did not know what to expect or how it would affect my future. I wasn’t sure if I would be able to continue college at UW-Madison, along with my other future dreams. I found that educating myself as well as everyone around me helped to establish a strong understanding of my daily struggles, making it easier to talk about with them. This was the first and most important step for me. I think time also played a huge role in helping me to deal with my diagnosis. As I started to slowly realize what I still was able to do, as well as accepting the things that I would not be able to do, I began to learn to just accept that my disorder was part of my life, but it would not define me. I have been able to stay in college, and keep my grades up, work out, and have friends. I’ve learned that I am not my disorder, and that I will succeed and have a full life, no matter what obstacles I have to overcome to get where I want to with my future.
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