MAC Region: J6 NGS
Tell us a little bit about who you are apart from your illness. My name is Deb Constien, 47yo with RA, living in Sun Prairie, Wisconsin with my husband Tim and 17 yo son, Jacob. Tim and I have been happily married for 22 years. I love advocating, volunteering at church and my sons school, crafting, scrapbooking, cooking and gardening. All things that take planning to enjoy!
What is your diagnosis and when were you diagnosed? I was diagnosed with Rheumatoid Arthritis when I was 13yo. It took some time to settle on RA as a diagnosis. JRA and Lupus were explored as I am sero negative for the Rheumatoid factor.
Can you talk a little bit about your experience with diagnosis? It took about 2 years to finally come to the diagnosis of RA. It was a difficult time for me as my parents thought they were protecting me by not informing me of what was going on. I understand their thoughts but in hindsight for me….I would have rather known. That’s just me! During this time there was juggling many different medications and dealing with the side effects while going to high school. Most all my friends didn’t have a clue what was happening as I “looked” normal. Tough time!
What is your greatest challenge in living with a rheumatic disease? The fact that I don’t look sick. There are many things I wish I would have the strength to use…like pre boarding flight, using a wheelchair to go from gate to gate. I can’t stand the looks that I would get. I do think I am a strong person and don’t want to be judged for appearing weak.
Describe something that keeps you hopeful in the day-to-day struggles with your illness. A CURE!!!! I am hopeful that in my lifetime, researchers will find a cure. I want it for myself and everyone I know that suffer from this autoimmune disease.
Why is advocacy important to you? I can advocate for myself and those who can’t. This has become a passion that I NEVER saw coming. I wouldn’t have it any other way!! I represent many groups and am thankful to be able to do so!!
