Fifteen years ago, patient advocate Vanessa Patino Lydia, PhD, received diagnoses of psoriatic arthritis (PSA) and fibromyalgia. Then, over a decade later, she was diagnosed with non-radial axial spondyloarthritis, following a severe flare-up that significantly affected her mobility, making it challenging to navigate stairs, enter or exit a car. This diagnosis had a profound impact on her quality of life, leaving her with a pessimistic view of the future.
Vanessa turned to complementary techniques, alongside medical treatments, to help alleviate her symptoms. She tried meditation, massage, journaling, and aqua therapy. She even made career adjustments, reduced commitments, and switched up her diet to cut out gluten and sugar.
While these complementary approaches were beneficial, the profound transformation occurred when she shifted her mindset…“ I made a mental shift from thinking of my condition as ‘something I have to fix or change’ to ‘something that I have to make peace with,’” says Vanessa.
Using Mindfulness Does NOT Imply Your Symptoms Are All in Your Mind
On the recommendation of both her rheumatologist and a trusted friend, Vanessa enrolled in a Mindfulness Based Stress Reduction (MBSR) class. She took the course, which typically takes eight weeks to complete, over six months, taking her time to observe the changes in her quality of life.
She tested many aspects of mindfulness along the way by watching videos, reading, reflecting, and practicing the following activities:
- Body scanning and breathwork
- Building awareness and slowing down
- Perspective changing
- Responding vs. reacting
- Not judging, self-love (loving kindness)
- Individualized choice
- Asking for what I need from family, from doctors
Mindfulness allowed her to accept her body and live in the present, reducing fear about the future. Vanessa emphasizes that mindfulness is a coping strategy, not a cure, and it has helped her navigate the emotional aspects of chronic illness.
She wants to advocate for mindfulness as a tool for others who need to connect with their bodies and hopes that rheumatologists will recognize its value in improving patients’ quality of life. Vanessa will present her story at the American College of Rheumatology (ACR) Convergence in San Diego, CA, where she plans to bring mindfulness to the forefront for rheumatologists and other patients with chronic conditions.
Her poster “Practicing Mindfulness to Improve Quality of Life” showcases how she became more aware of how she uses tools she practices to cope with life’s stressors. She will also present her research to her fellow peers in the Patient Governor group, which consists of patients representing the diverse backgrounds, perspectives, and experiences of the CreakyJoints Community.
“It is important for providers to acknowledge that pain is part of chronic illness and that mindfulness strategies can ‘help cope’ with the pain,” says Vanessa, adding that mindfulness does not implying that pain is all in the mind and, therefore, mindfulness/therapy can “fix” your mind. “I do not want patients to feel shamed or blamed like they wouldn’t feel pain if they did more of XYZ…It is part of my treatment plan. It’s a coping strategy.”
In Her Own Words
Here, we talk with Vanessa about her experience submitting a patient poster for ACR and what she hopes others will take away from her learnings:
CJ: Tell us about your poster.
Vanessa: “I do a lot of reading and research. I wanted to know what strategies could help me to connect with my body. A very close friend who passed away was a real proponent of mindfulness. My rheumatologist has a very holistic approach and asked about trying mindfulness. I took the course; I took my time. It was part of a New Year’s resolution. I wanted to show what changed in my quality of life in terms of how I was navigating myself through the world. The poster is a replication of what some of the strategies are and observationally what changed. Mindfulness is about accepting where you are and living in the present — and when you live in the present, the future isn’t as scary.”
CJ: Why was this topic important to you?
Vanessa: “I want to advocate for mindfulness for people who need tools and strategies to connect with their body. It may work best for people who have done some work on themselves already. It has helped with the grieving that chronic illness creates.”
CJ: Why is it important to showcase this poster at a forum like ACR?
Vanessa: “First, it’s important for rheumatologists to see these complementary strategies and know that they can share these resources. They need to see that some people have tried mindfulness and it could be an option for patients. Second, I want my poster to be seen as an education component for rheumatologists to see that quality of life is more than clinical. There’s more than just the physical aspects of chronic illness — there’s the emotional component. If we don’t acknowledge that, it is a disservice to patients.
Using Mindfulness When You Live with Chronic Illness
Here are a few lessons Vanessa learned along the way about mindfulness.
- Connect with your body. “Meditation is less about fixing something but it’s more about befriending your body,” she says. “It’s about being able to see the bigger picture and feel less isolated.”
- Advocate for yourself. “When you see yourself differently, you can say ‘no’ intentionally and consciously.”
- Use it as coping strategy. “Mindfulness helps you cope with chronic illness. Mindfulness is not a cure, rather it’s a means of coping with chronic illness and bringing your body back into the present.”
- Make it a practice. “If you practice mindfulness, you’re making a choice to strengthen the connection between your body and yourself,” she explains. “Mindfulness helps with many aspects of stress.”
- Expand your toolbox. “I still wake up in pain” says Vanessa, “but now the difference is I have better tools because of practicing mindfulness exercises. It makes me more aware to be able to connect with my body to bring me back to the present. The 45-min body scan — it’s like a detox. It feels like a full-on cleansing.”
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.