An Interview With:
The Girl With Arthritis
Today we have a Q&A with Elizabeth Medeiros who has lived with Juvenile-onset psoriatic arthritis for many years. She writes at her own blog at The Girl With Arthritis as well as writing for various publications including Juvenile Arthritis News. Her writing is always full of wisdom and she shares tips and advice on living life to the full despite having arthritis. Thank you for joining us for a virtual Q&A.
We'd love to hear a little about your background and when you were first diagnosed with arthritis?
Hi! I'm Elizabeth, and I'm a designer who lives and works in beautiful Boston, MA. I'm a very creative person; I love to crochet, write and illustrate, and craft. When I'm not working on one of my many projects, I like to write about my experience living with juvenile-onset psoriatic arthritis or spend time with my fiancé.
Despite having lived with juvenile arthritis (JA*) for most of my life, it was a long road to getting a diagnosis! I've probably had JA since I was a toddler, based on my parents' observations. Unfortunately, their concerns were often dismissed- even when I had a flare that resulted in hospitalization for a week at age 8. I didn't see a rheumatologist until age 11. I was finally diagnosed with juvenile idiopathic arthritis at 12, and then they specified it to juvenile psoriatic arthritis at 14 when a new doctor noticed psoriasis on my nails.
And how are things going now?
Things are going OK now! I take it a day at a time, but generally, I'm functioning pretty well right now thanks to my biologic medications and from the proper exercise routine.
When did you first start writing about your experiences and what inspired you to do so?
I started writing my blog at 14. I got the idea from characters on Disney and Nickelodeon shows who had blogs, but I was inspired because I couldn't find resources for people my age with JA online. Parents or adults with arthritis wrote most blogs (at the time), and while I followed them religiously, there were many times I didn't relate. So, I wanted to create a place where people could read about the experiences of a real teen- and my advice!
I especially emphasized my struggle to be diagnosed since that was also something not many people addressed. Over the years, many people appreciated that because it's not an easy subject to address.
We always find your writing so full of wisdom and packed with practical advice too. Can you suggest any articles you have written that would be a good starting point for someone newly diagnosed with juvenile arthritis?
Yes! First and foremost, I would like to share my column, "For a Child Newly Diagnosed With JA, There's Hope for the Future." Sure, tips for medical appointments or a breakdown of each type of arthritis is helpful, but hope is what motivates you to keep moving forward. The future might look a little different than you imagined, but happiness can be found on path B, C, or even Z! [We completely agree - that's exactly why our support packs are called "A Little Box of Hope" to give children and families hope for the future]
The second column I'd share would be "Balancing Life and Health Limitations." It's hard to balance the feelings of "I can't let this illness control my life" and "I need to listen to my body," even for someone who isn't newly diagnosed. But learning to test your limits within reason and set clear boundaries will get you far and help you achieve the happiness we discussed in the first column.
Is there anything you have found particularly helpful in managing your condition? And any tips for coping with the really difficult days?
As a child and even today, I've found water to be a useful tool to battle pain. I wrote about it in a column, "Just Add Water: 5 Ways to Help Kids with JA." I love heat, and a hot bath or using a hot water bottle can be beneficial. My mum always gave me a warm bath at the end of long, painful days, and it helped to wash away my pain and frustrations.
I also find swimming to be very soothing. It can be hard to swim in a chilly pool, which makes me tense and stiff, though I can appreciate the cool water when I'm swollen. But I love indoor pools or going to the lake during the summer. Exercising in a pool is so much less painful. But even just floating around can be relaxing.
Is there any advice you would give for how others can help a young person with arthritis, whether that be advice for a friend, a teacher or a parent and how they can best support that child or young person?
As a loved one of a young person with arthritis, the best thing you can do is to be a listening ear. And to respond with compassion, not advice, comparison, or worse- "it could be worse." Sometimes, remarks dismiss your experience. It's so important to approach people with compassion and validate their experiences.
For parents, I recommend putting yourself in your child's shoes. While JA resources don't often mention it, kids and young people might be moody or grumpy when experiencing a flare of symptoms (pain and fatigue). And it makes sense- I'm sure you're not in a great mood when you are sick, tired, or uncomfortable. It's good to keep that in mind when it comes to discipline. While kids with JA shouldn't be given special treatment, they may need a little grace. Sometimes, your child might need your help finding a way to cope rather than punishment.
I think teachers have a wonderful opportunity to support young people with JA. While students should have individualized plans to address their specific needs, I was grateful for teachers who went out of their way to help me succeed. Allowing an extra moment to get from class to class, a photocopy of the nightly reading, and making sure physical activities could be as inclusive as possible helped tremendously.
I wrote this column a few years ago addressed to teachers, and I still share it at the beginning of the school year every year in the hopes educators will learn more about JA and why students may need a little extra TLC.
We love seeing your crochet projects on your Instagram feed. Tell us more about why you love to crochet and we'd love to hear about any other hobbies that you enjoy.
Crocheting is my favorite distraction therapy! Focusing on the stitches or thinking about the loved one who will receive my creation takes my mind off of whatever I'm feeling in my body. Making blankets, shawls, and baby clothes has gotten me through some rough times.
When I was younger, I was constantly either swimming or on my bike. Not only was it enjoyable, but it was an excellent exercise. My joints were in great shape back then, no doubt from all the gentle activity! It's something I'd like to start doing again at some point in the future.
Although here at Juvenile Arthritis Research, we are based in the UK, we often get requests for information and advice from people all around the world. We've made many of our resources available online so that they can be accessed from anywhere, but we wondered if you knew of any charities or organisations in the United States that can help support families over there?
Yes! The Arthritis Foundation does excellent work for young people and their families. They host a national conference every year. Also, there are chapters for every state that host get-togethers and outings for JA families.
The Arthritis Foundation also hosts summer camps for children and teenagers with JA. They're lovely week-long programs that help kids with JA find acceptance and form friendships that last a lifetime. Many former campers even go on to volunteer there once they age out of the program!
What would you love to see happen in the future to make a difference to the lives of children and young people with arthritis?
Early diagnosis is key to arthritis remission. I would love to see more awareness of JA , especially from healthcare professionals. I've heard so many stories of children with JA being initially dismissed by their doctors and told they have growing pains. Not to mention, in the US we are facing a paediatric rheumatologist shortage. I'd love to see more physicians specialize in paediatric rheumatic diseases, or at least learning more about them to help identify JA onset in their patients.
We are completely with you on that point. There is very low awareness in the UK too. That is one of the reasons that we are working hard to raise awareness in communities, schools and frontline health professionals with our #ThinkJIA campaign resources.
*In the UK, JA is more often referred to as JIA - juvenile idiopathic arthritis.