Bethany’s story: living with lupus
Author: Guest blog by former SickKids patient Bethany
Often in life, people are within the presence of those who suffer from certain illnesses or diseases but never could imagine that, one day, it may be them conquering that same battle. Growing up, I watched my mom suffer from lupus and watched how it limited her, pained her and hurt her emotionally. Hospitals were our second home and medications were her second nature, and all she could ever tell us was how she hoped her kids would never have to face the same burden.
In the summer of 2005 when traveling with my family, I began to develop symptoms of arthritis. I wasn’t too sure of what it was at the time nor could I understand why it was happening, but I began to later realize that my mother’s fear was becoming a reality.
Returning from our vacation, my mother insisted on booking an appointment with my family doctor right away. Upon diagnosing me with arthritis, my doctor referred me to a specialist, Dr. Schneider at the SickKids Rheumatology clinic. Dr. Schneider and his team were wonderful. They were thorough, caring and most of all, comforting. They made sure that every test that needed to be done for me was and that every need in regards to my arthritis was met.
After living with arthritis for about a year, I was beginning to get the hang of it. Plaquenil and naproxen twice a day, special meal requirements, appointments four times a year and so on. Then in late 2006, while at an appointment, I was in for a surprise.
I could tell that things weren’t right that day. I spent a large portion of my day getting tests done and waiting for results. When the doctor finally came in, he shocked my mother and I with news that would change my world. At age 13, I had developed lupus as well.
Though this was a difficult time, I could not imagine getting through it without the support of the Rheumatology team at SickKids. I was provided with a great lupus specialist, Dr. Silverman, as well as counselors, nurses and a highly specialized team of doctors. I was given the most efficient care and I knew that my needs were always a priority.
At age 17, I began to have a very serious lupus flare-up and was unable to do anything but cry. My mother knew that this was unlike any other flare-up that I’ve had before so we went immediately to SickKids. I ended up staying for roughly a week, and the doctors made sure that I was fully healed before being able to leave their care.
I had always had a love and appreciation for SickKids, but it wasn’t until that week when I began to truly realize my love for them. Providing me with the most phenomenal team and care, a private room with a couch for my mother to stay as well, a personal television to stay entertained and even a personalized menu in which I could order from several times daily. It felt like a hotel experience rather than a hospital.
When I turned 18, I had to transfer to an adult clinic for my lupus. However, luckily for me, I was provided with the easiest and most helpful transition from SickKids to Toronto Western. As well as providing all of the necessary information and documents to my future lupus doctor, SickKids provided me with a transition appointment to help prepare me for my new experience.
My experience with lupus was made so simple because of the great team at SickKids. The only thing that was difficult was departing from the people who had become like family to me. SickKids made me confident, aware, responsible and comforted. Along with the support of my family and friends, they showed me that it is possible to live everyday with arthritis and lupus and lead a normal life.
I am now 21 years old and am happy and healthy. I have been living with arthritis for nine years and lupus for eight. Looking back at myself when I was 12, feeling weak, tired and physically limited, I could never imagine being where I am today.
I am now in my fourth year at York University, studying English and pursuing a career as a teacher. I am able to work, volunteer, study and maintain a social life while living with my lupus and arthritis. I am so thankful everyday for the support that I have received from the team at SickKids, my family and my friends. It has taught me to realize that I can conquer any battle that I face.
It is not always easy at first, but it took time for me to realize that … I have Lupus, but Lupus doesn’t have me.
"I have Lupus, but Lupus doesn’t have me."
Poem about Courage with Lupus - by Bethany
Courage is finding out about my lupus and accepting it as part of my life.
Courage is using medication as a means of survival and still being happy regardless of the circumstances.
Courage is dedicating myself to my health and making hospitals my second home.
Courage is having a painful lupus flare-up in the morning and going for a swim in the afternoon.
Courage is not viewing lupus as a form of limitation, but a way to expand my view on everything else.
Courage is being happy despite anything that could be wrong with me.
Courage is accepting that being unique can be, and is, a good thing.
Courage is accepting that I may not be able to do all that I've been able to do, but that won't stop me from being who I want to be.
Courage is accepting that, despite my condition, I am stronger than most.
I will never let my lupus determine my happiness or the outcome of my life.
I will live as a lupus fighter, not a lupus victim. I have lupus, but it doesn't have me.
