Location: Ottawa, ON
Diagnosed with Juvenile Rheumatoid Arthritis at age 16
How has your condition affected you? Significantly and every day would describe how I have been impacted by my RA. I have had a knee scope and two shoulder replacements. My shoulder disintegrated before my eyes, and I now beep going through airports. A couple of sentences cannot do justice to the impact joint replacement has had on my life.
There hasn't been a day in my 21 years living with it that I haven't thought about my RA. Can I do this? How much energy do I have? How sore will I be tomorrow? What is the tradeoff? It's only now that I have finally found a drug that works for me, am I thinking less about what I can do and focusing more on just doing it. It's a different struggle, and I am happier to face these challenges. But I still think about my RA every day.
What would you like for other people to know about your condition? Living with a chronic disease is a roller coaster. From one hour, day, year to the next. My emotions have ranged from rage to despair, hope to fear, joy to misery, jealousy to confident, exhausted to elated. It is emotionally and physically exhausting to have a chronic disease. My ability to care for myself and others has ranged from not being able to dress myself, comb my hair or walk to school, to being able to run a 5K race with energy and smiles to spare. I have learned, rather painfully, that there are limits your body puts on you, and there are limits you put on yourself. Only time, trial and error will help align what you want to do with what your body is willing or able to do.
What would you like to tell someone who is recently diagnosed with RA/JRA? Reach out and connect - - there are others in your local community and online who truly understand your struggles and triumphs. I took a longer road reaching out to the RA community, but I have felt nothing but support from everyone I know in the online community. Trust your doctors and follow your treatment plan - to start. Over time, you will come to know your disease better and be able to make more informed choices based on what is best for you. Research your disease, learn everything you can - be an expert so you can educate others. Eat well and get lots of sleep. Share your struggles with others - family and friends want to help, they just need you to articulate what you need.
Megan's favorite quote: "What doesn't kill you, makes you stronger."
Thank you so much for sharing your story, Megan!