Becoming Empowered With RAby Britt J Johnson Patient Expert
October 12 is World Arthritis Day and there is no better time to talk about empowering our individual and collective voices. Individually, we can be empowered to get the best care possible in living with rheumatoid arthritis. Collectively, we can join our voices together, and create positive change and awareness for RA. When dealing with pain and fatigue, it can feel overwhelming to try and be empowered. With a small shift in mindset, hopefully you will see that the future is in your hands!
How I became empowered
People often ask me when I became an empowered patient. There wasn’t any sort of “aha” moment, it was more a slow build toward empowerment. More than anything, I became empowered out of necessity. For the first 14 years of my autoimmune arthritis, I went undiagnosed and practically untreated. I had to learn to stand up for myself, communicate effectively, and be my own best advocate. No matter your personality and whether it comes naturally to you, we all have it in us to be empowered in living with rheumatoid arthritis.
As my mom will tell you, when I was a child, there was no internet. (I’ll pause for any millennials picking their jaws up off the floor.) We had doctors to rely on, “dusty library volumes,” and late-night phone calls to other parents of chronically ill children. I am all too lucky to have the parents that I do. They were always by my side, willing to demand answers about what was happening to my body. I learned to be empowered by watching them be empowered.
By the time I was a teen and my autoimmune arthritis was getting much worse, I started learning to “Yahoo” things — that’s what we did before “Google” became a verb. I began clicking and reading every link that turned up in response to “spondylitis” and “young adult with arthritis.” I inherently understood that my life was going to be tougher, but I knew that I too could be tougher than RA.
Becoming empowered during disease onset
If RA is relatively new to you, and/or you’re exhausted and in constant pain, it can feel impossible to be empowered enough to seek out good care and try various treatment plans. But let me tell you something, if you are reading this, you’re already empowered! Empowerment is educating yourself about RA, and working toward confidence in who you are with RA.
A lot of times it’s easy to feel powerless because we don’t have control over our RA. I have found that I am happier when I control the parts of my health that I can. By focusing my attention on the areas where I can exert control, I start forgetting about the things I can’t control.
One big simple area for me is my diet and nutrition. I can control what I purchase at the store, and therefore what is in my house and available to me throughout the day. My RA is worsened by sugar, dairy, and processed foods. So every day that I don’t eat those, I feel better —- more empowered.
Being empowered at the doctor
It can be really intimidating to go to the doctor. We’ve been trained to view physicians as all-knowing, but if we change our thinking, we instantly become empowered. What if I told you that you are also an expert in RA? You are the one that lives with it after all! You understand parts of the disease that your physician may never fully grasp. By swapping our thinking, it can become easier to stand up for ourselves and communicate our needs.
Asking for help is empowerment
Now there are times when we simply cannot DO. Our bodies won’t let us, and learning to communicate this is another form of empowerment. The people around us don’t know what we need unless we tell them, and they’re not necessarily going to pick up on our subtle “hints.” Tell people how you need help in a clear and straightforward way. Being direct can actually save you energy. I find saying, “Can you please get me an ice pack and a cup of tea?” gets those items to me much faster than by saying, “I’m hurting.”
I find that the more I practice empowerment, the more I become empowered. We each have it in us to be our own best advocates, to search for and find the answers we need, to communicate clearly and effectively, and ultimately to improve our quality of life. Like anything, it’ll take practice. Be careful though — small steps toward empowerment often lead to more, bigger steps forward! Before you know it, you may find yourself speaking out for others and your RA community!