By Spondylitis Association of America
Friday, July 26, 2019
Helpful Hints is a recurring feature, aimed at sharing our community’s knowledge and experiences. July is Juvenile Arthritis Awareness Month and we want to show our support to kids and teens with spondyloarthritis. In this installment, we asked our online community, “What advice or words of encouragement do you have to share?” We share the responses with our thanks.
If you are a parent of a child or teen with juvenile spondyloarthritis in Southern California, consider checking out our SoCal Parents spondylitis support group, led by Belen Diaz de Leon-Gonzalez. You can keep track of upcoming meeting dates here.
I would like to say that even though it seems like you are so different from your friends and family, and that you have aches and pains that do not seem normal for your age, to never doubt yourself and to try to take life one day at a time. Never let anyone make you feel less than the beautiful person that you are because of your pain. As you get older, you will meet other people with chronic diseases and very likely with spondylitis. Then you will have an opportunity to get genuine support from others that are going through the same things you are.
Stay true to who you are and know that you’re always beautiful, strong and worthy of anything and everything in this life despite what this disease may mean and the pain that it brings. When I try to do things that healthy people can do, I always say, “I just want to be normal. I just want to do what the average, healthy, strong person can do with no injuries or complications or pain.” But who gets to say what is “normal?” This is my new normal and I have to accept and honor it. Accept everything about you in Love and Grace and always know the strength that is within.
When you're in pain it's sometimes hard to think clearly. Make a list of things that help (ice, pain meds, stretching, etc.) in the order they help from least to most. When you need help the list will remind you of all your options and then you can pick appropriately. #youcandothis
You have strength others know nothing about. Take it and soar!
If you know something is wrong, something is wrong. Don’t let anyone tell you otherwise. You’re also not lazy as everyone may tell you.
Say to spondyloarthritis, “I'm more powerful than you.”
This disease does not define who you are!
Don't let the disease win. You can live a life, not just exist. Be the storm.
You're not the only one. Find support in your loved ones, friends, family, and support groups like this one. There are others who know what you're going through.
Don't battle it alone.
Stay strong and positive, warriors!
Listen to your body. Close your eyes in a warm bubble bath with music. Go swimming with friends. Self-care, for your body and your soul, is more important now than ever.
Don't let anyone tell you it is just “growing pains.”
I was diagnosed with this at 13, after my mom was told I was "pretending" or had growing pains. I changed my diet, do daily yoga and haven’t had much pain in decades. Self-care and self-awareness are so important.
Sport every day! Only way to slow down ankylosis and fusion.
Stay strong!!! You! Can! Do! It! Please follow @danreynolds He gave me hope for my brother. My brother was diagnosed 15 years ago. My brother read Dan’s story and was so full of hope and motivation. If Dan and my brother can do it, so can you!!!
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