I've been lucky to connect with Robin Shirley, a girl who knows what it's like to grow up with pain. Robin was diagnosed with Juvenile Rheumatoid Arthritisat 11 years old. She has learned a tremendous amount from her chronic illness and writes a wonderful blog called The Truth About JRA. Her writing shows howstrong, passionate, and driven she really is. She discusses her unique treatment approach that focuses mainly on nutrition.
Enjoy her answers below and stay tuned for a future post about Robin's latest project - an incredible conference she has organized to benefit her fellow patients. You wont want to miss it!
What is the year you were first diagnosed? How old were you?
I was diagnosed in 2000 at 11 years old (I think...who wants to remember that year anyways!)
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
There would be so much to say! But first I would listen to what they have to say. What children with arthritis need is someone to listen to their fears and concerns. For the sake of answering the question though, I would encourage them to see their disease as a teacher and ask themselves every day what they can learn from this experience.
Please explain a bit how your condition affects you.
My most noticeable symptom is joint swelling and pain. This is the hardest to cope with because it is the most visible to others…so that brings up all the self doubt and emotional stuff. I have been able to control the swelling mostly through nu
trition design, but stress and negativity really make me flare. I have to make sure I laugh plenty and relax every few
hours (just gaze out the window or cuddle up in a comfy chair) and avoid those who have a pessimistic outlook on life. The disease hasn’t changed since I was diagnosed except that the swelling of the joints will ebb and flow at different times. I used to have horrible fatigue and aches, but that subsided when I changed my nutrition and lifestyle.
Where do you get your strength?
The best answer that I can give is that I get it from having faith that the future will be better. I know that is hard for some to understand or accept. It is a very personal thing and a lot of people who deal with chronic illness go through periods of faith and periods of depression. I have been lucky to have a good family support system and I know which food and vitamin deficiencies can cause depression, so I make sure that I watch out for that and stay on the optimistic side of things.