New York City
Diagnosed with Juvenile Rheumatoid Arthritis at age 16
How has your condition impacted you? My condition has been a challenge since the day I woke up with stiffness, pain and swelling in my feet.
As the days were passing by, I was frequently going to the ER as it was affecting different joints of my body and I had no explanation why I was going through so much pain. I felt tied down, but with pain, and I couldn't do anything . . . just wait. The pain was so intense that there were no words to describe it. My family was very understanding, they never left my side. After 5 months of pain and struggling I was diagnosed with JRA. I felt relieved, but I was in denial. I didn't respond well to the medication after the first year, and it was devastating. At first, nobody understood me and it was frustrating because people don't know that kids get arthritis too. There were days that I couldn't get up from bed and times that I wanted to give up. Endless nights of crying without sleep . . . I asked God why he put me through so much pain. Now I know because I'm strong and I can cope with any situation no matter how difficult it is. It changed my life in positive ways. I became stronger and a more patient person than I was before JRA.
What would you like for other people to know about JRA? Be considerate and understanding because you have no idea what type of pain we go through. Dealing with this condition is unpredictable; there are ups and downs. When I tell people about my condition they always tell me "Oh, but there's a cure for that," or, "You're too young to have that." JRA is an autoimmune disease; it has no cure and it can happen to anybody. Do research so you can understand the disease. If one day you see me crying because I am in pain, just help me. It will show me how much you care and understand.
What would you tell someone who is newly diagnosed with RA? Never give up and don't let this condition get the best of you. There will be days that you will feel grief, but always stay positive. At times will you become isolated and depressed. Keep in mind there will be better days and that you will appreciate the good and bad days. What other people take for granted we don't . . . the simple things like walking, dressing yourself, getting up from bed, etc. You will become stronger, patient and appreciate the smallest things. It might sound crazy, but battling with a pain against your own will makes you special and stronger than the pain. Never lose hope and maintain strength at all times; having a family and friends that cares helps a lot.
Thank you so much Melissa!