ACT didn’t make my anxious thoughts go away entirely, but it gave them less power over me.
People often think that pain and fatigue are the hardest parts of living with rheumatoid arthritis (RA). After 18 years, however, I’ve realized that the “unknowns” and gray areas of life with this disease have actually been harder than any individual symptom.
When I say “unknowns,” I mean uncertainties about my future and confusion about the best actions to take for my health. For example, throughout one day I might ask myself:
- Will my new medications work? If so, for how long? What will I do if they don’t work?
- What will my future look like? Will I be able to work full time? What if my condition worsens and I can’t do the career I worked so hard for?
- What about my family? Will my pain and fatigue get in the way of my ability to be there for my child? Should I have another baby, or will that be too much for my body to handle?
- What about nutrition and exercise? Am I doing the “right” things or should I be doing more?
It’s normal to worry about your future, especially when you live with a chronic condition like RA. A 2019 survey by the Arthritis Foundation found that 66 percent of people with arthritis of any form reported anxiety or fear in the last 7 days.
In fact, anxiety is a normal human response to fear, stress, or a perceived threat. However, when anxiety feels too difficult to handle on your own, getting professional help can help you learn tools to cope and face uncertainties with a better sense of mental well-being.
I first went to a psychologist for mental health therapy when my son was about 1. I thought I just needed a few tips to cope with the transition to motherhood.
However, through the therapy process, I ended up completely changing my relationship to “bad” or uncomfortable thoughts and sensations, and this has transformed my life for the better.
My therapist used an approach called acceptance and commitment therapy (ACT), which has been found helpful for many people living with chronic pain.
One 2011 study comparing ACT and CBT for chronic pain found that ACT was as effective as CBT, and clients were more satisfied with ACT than CBT. Additionally, a 2017 study found that ACT led to improvements in anxiety levels, psychological flexibility, and pain acceptance in people living with chronic pain.
According to the Association for Contextual Behavioral Science: “ACT teaches people how to engage with and overcome painful thoughts and feelings through acceptance and mindfulness techniques, to develop self-compassion and flexibility, and to build life-enhancing patterns of behavior. ACT is not about overcoming pain or fighting emotions; it’s about embracing life and feeling everything it has to offer.”
This was very different from the approach I had been trying previously on my own, which was more along the lines of traditional cognitive behavioral therapy (CBT). Within a CBT framework, I identified which of my thoughts were “distortions” and tried to reframe or change them.
However, the problem with CBT and uncertainty is that the future is by definition uncertain, so how can you actually evaluate whether anxiety is truly a distortion or not? What if my fear about my future with RA is accurate and warranted? What do I do then?
“In ACT, our main interest in a thought is not whether it’s true or false, but whether it’s helpful; that is, if we pay attention to this thought, will it help us create the life we want?” he writes.
I found this approach to be really refreshing. Instead of spending time labeling my thoughts as good or bad, positive or negative, true or false, I instead asked: Does this thought help me live the life I want? If not, I learned, with the help of my therapist, to simply allow it and move on, rather than struggling to eliminate the unhelpful thought.
My therapist led me through a variety of exercises that allowed me to sit with my fears for the future with an attitude of curiosity and non-judgment.
She also showed me that I could live alongside uncertainty and that uncertainty is simply a fundamental fact of life. I don’t have to like all the uncertainties around my RA, but I can stop struggling with them.
She then taught me how to redirect my focus to what I value in life and what’s still possible despite my uncomfortable sensations (like pain and fatigue) and thoughts (like fears for my future). And yes, she taught me the value of acceptance, even in the context of chronic pain.
Now, I want to take a moment to clarify what the word “acceptance” means in the context of ACT.
As Harris writes: “Acceptance doesn’t mean you have to like your uncomfortable thoughts and feelings; it just means you stop struggling with them… acceptance literally means ‘taking what is offered.’ It doesn’t mean giving up or admitting defeat; it doesn’t mean just gritting your teeth and bearing it. It means fully opening yourself to your present reality — acknowledging how it is, right here and now, and letting go of the struggle with life as it is, in this moment.”
Acceptance does not mean giving up hope for better pain relief or less anxious thoughts in the future, but it does mean allowing and connecting to what is occurring in the present moment.
Prior to therapy, I assumed that if I connected to my fears about the future and let myself acknowledge my pain, even for a brief moment in the context of a mindfulness exercise, I would feel even worse. However, after confronting and allowing my fears and painful sensations in therapy, somehow I actually felt better.
Why did this happen? My theory is that in accepting the inevitable discomforts and uncertainties of life, I had more energy to spend on what was still possible.
Instead of expending so much effort trying to control my future or find answers to questions that ultimately have no clear answer, I had the energy to attune to the many ways in which I could still live a meaningful life according to my values, despite RA.
In allowing myself to acknowledge my pain and then move on to focusing on what’s still possible in my life, my pain became less of a roadblock to my happiness.
None of us know what the future holds, but when you’re living with a chronic condition like RA, uncertainty around the future can feel overwhelming. If you’re struggling with anxiety alongside RA, you don’t have to face it alone.
Finding a therapist who specializes in acceptance and commitment therapy or mindfulness-based therapy can be the first step toward living a fuller, more present life.
If you’re like me, ACT won’t make your anxious thoughts go away entirely, but it may give them less power over you, which frees you up to focus on what’s really important in your life.
Cheryl Crow is an occupational therapist who’s lived with rheumatoid arthritis for 18 years. In 2019, Cheryl started Arthritis Life to help others thrive despite arthritis. She facilitates online courses and support groups to help people adjust to their conditions and live full and meaningful lives. Most days you can find Cheryl creating life hack videos, sharing patient stories on the Arthritis Life Podcast, or spreading the word about acceptance and commitment therapy (ACT).