I wear my costume of wellness to survive a life with rheumatoid arthritis (RA). But it needs to be worn mindfully.
My name is Stefanie, and I have RA. I’m a family nurse practitioner, and I am also a RA coach for women who have RA. I am married, and I have two young boys.
I am often asked, “What is your secret weapon to living your best life with RA?”
My secret weapon is my costume of wellness.
I use my costume of wellness to survive a life with RA. Even when I am not well, I wear this theoretical costume.
Sometimes, this costume is ripped, stretched, and torn. Sometimes, my RA symptoms show right through despite my best efforts. Sometimes, I can only wear my costume for a few minutes at a time. Sometimes, it hides my pain and fatigue, and sometimes, it doesn’t. Sometimes, it doesn’t even fit at all.
If you have RA, you likely wear a costume of wellness, too. Whether you have intentional meditations you do to prepare for your day, or you simply reply, “I’m fine” when you’re not, you are probably familiar with this costume.
Life with RA is hard, and I use my costume of wellness to cope and survive.
Children love dressing up in costumes, especially around Halloween. They can be anything they want — the latest Disney character, a strong warrior, a princess, a pirate, or a professional sports player.
But every year at Halloween, I am reminded of the costumes that people with RA, like myself, wear every day.
I often ask myself, in an ideal world, what do I want to be today? I wear my costume of wellness to create my ideal identity and health.
Whether you have RA or not, it’s common to constantly “dress up” to create a new identity.
This costume can be very literal, with clothes, makeup, and jewelry. It can also be made with words — “Yes, I’m fine.” “I’m doing great!”
Sometimes, the costume can involve pretending not to feel the chronic pain that limits the use of your hands, diminishes your energy level, or drives your depression.
Our costumes are worn every season, and they don’t go away after Halloween.
A costume of wellness can be like a protective mechanism for people with RA.
If you think about RA every minute of every day, you might never get anything done. Being reminded of something that can be limiting is not always helpful. Catastrophizing doesn’t just drag your mood down, but it can also increase your pain levels.
I like to think of my costume of wellness as my method of staying positive. Positive thinking and self-talk can be effective methods to manage stress and even pain. For example, in patients receiving dialysis, positive thinking training was shown to reduce stress and anxiety and improve overall quality of life.
Wearing my costume of wellness helps me stay focused and productive on other tasks. In this way, it helps me prioritize things that truly matter in my life.
Just as you would buy a new outfit or accessory for a special event, you can choose to wear your costume of wellness when it’s most important for you.
Your costume of wellness also allows you to have privacy about your health. You can choose to share or not to share.
Most of the time, I just want to live my life without people asking about my RA. I don’t want to be peppered with questions or have attention drawn to me when I have other priorities on my mind.
Sometimes, wearing a costume of wellness can have negative consequences.
Research shows that overly emphasizing positivity versus negativity may create an unattainable norm of emotion that compromises individual well-being.
Social expectations to be happy can be detrimental. Keeping up appearances can be exhausting and limit our ability to get help. This is sometimes known as “toxic positivity” and can be used as an avoidance strategy to ignore our true emotions.
For example, telling myself that I’m fine all the time has led to feelings of failure on my unpredictable bad days.
Remember — wearing a costume of wellness should benefit you in the ways that you need it to. It should help you live your best life.
It should be convenient for you to put on and take off, too. Give yourself breaks from your costume and be kind to yourself.
Acknowledging that you are not fine and choosing to really feel your feelings is so important for your mental health.
So, there are times when you shouldn’t wear a costume of wellness, even with the best intentions to protect yourself. In these times, it’s important to find a safe space to be vulnerable. This can include a support group, a church group, close friends, a coach, a therapist, or even burying yourself in a hobby.
This Halloween season, I recommend you wear your costume of wellness mindfully.
You are in control of when you wear your costume. Think of your costume as another tool in your tool belt for managing your RA. It’s yours to adapt to your life.
You now know my secret weapon to living my best life with RA. I hope you find as much success with it as I do.
Medically reviewed on October 20, 2022
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