Learning you have rheumatoid arthritis (RA) will change your life. First come the pain and stiffness that make daily activities a challenge. Then there is the fatigue that overwhelms and disrupts your goals. You desperately want your old life back but instead you seem stuck in an unwanted new reality. Before you know it, the autoimmune disease you never asked for has suddenly become your identity. I know, because it happened to me.
One day my husband came home from work and it suddenly dawned on me that my mind was completely consumed with RA. I had nothing to add to our conversations that didn’t relate back to my experiences with this illness. I spent my days researching and blogging about RA. All my new friendships, conversations, and thoughts centered around RA. I didn’t want this to be the new me, and I knew I had to make some changes. In fact, even as I continue to do RA advocacy work and learn more from others, I have to regularly check in with myself to make sure my identity is not being subsumed. What helps? Following these five steps:
1. Don’t Spend All Your Time Researching RA
This one is challenging, especially early in your diagnosis. There is power in understanding what is happening to your body but be sure to limit your time with Dr. Google to a few times a week. Seek out a safe, supportive online community where you can ask questions, learn from other people’s experiences, and share your own journey. (The HealthCentral RA page on Facebook is one place to start. Look for websites, magazines, and other sources that give reliable and up-to-date information about RA, including CreakyJoints and The Arthritis National Research Foundation. But to avoid falling down the RA rabbit hole, you’re going to need to build a couple of fences. So set your boundaries, then stick to ‘em.
2. Use Social Media for Good
Finding others who understand what you are going through is amazing. I love that I now have friends I can message and ask things like: “Did your eyebrows disappear on medication and if so, how do you deal with it?” However, there can be a lot of pressure to stay active in the online RA community — following new friends and commenting or “liking” their posts. And just like in the non-RA world, there’s a lot of negativity. It is easy to get caught up in the horrors of RA rather than focusing on folks who are out living life with their health condition. The goal? Social media should nourish you — not stress you out.
3. Remember You’re Still You
Like all big changes that occur in life, such as becoming a parent or getting your first professional job, chronic illness changes you. But at your core, you’re still the person you have always been, only stronger. Remind yourself of the things you loved doing before that are attainable with your new body. For me, it took a while to realize I can still ride my bike, but with some extra care. I also stopped feeling guilty about how my health condition might affect my children and just started doing what I do best — mothering them. RA cannot take away your passions, relationships, or core values. Those are yours forever.
4. Learn Something New
It takes time and patience to learn the ways of your new body. I was often angry at my body for not doing what I wanted it to do, but in the end, I realized I needed to learn new ways of doing things and discover more about myself. As an introvert, I never imagined I’d be a health advocate, speaking on behalf of our community, but that strength became known to me after my diagnosis. This new skill has helped me feel more confidence in the workplace and everyday life. There are many interesting things inside of me that I may not have ever learned without RA. Give yourself the time and space to discover a new passion. With that at your back, you can’t help but move forward.
5. Practice Gratitude Every Day
There’s a lot to hate about having RA, and complaining about pain, fatigue, medications, doctors, and people who don’t understand you could go on forever. However, if we allow ourselves to only see the bad, we miss so much of the good. We forget to be happy for our friends and family. We stop listening to the beautiful sounds that surround us and the ability to laugh out loud. Life is still happening, despite you having RA. Look for it and appreciate it.
I like to end each day thinking of two things that made me happy that day. Often it is simple things like hugging my daughter before bed or eating a meal made by my son. Other days, I look for gratitude in my morning walks, thankful that my body has allowed me another day outside with my border collie.
RA is a part of you, but it doesn’t own you. You and I are so much more than the symptoms of this chronic illness. Find your strengths (and your people) and let them guide you as you discover who you are becoming as a person with RA.