

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.Â
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.   Â
While these complementary approaches were beneficial, the profound transformation occurred when she shifted her mindset…â I made a mental shift from thinking of my condition as âsomething I have to fix or changeâ to âsomething that I have to make peace with,ââ says Vanessa.Â
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.Â
She tested many aspects of mindfulness along the way by watching videos, reading, reflecting, and practicing the following activities:Â
- Body scanning and breathworkÂ
- Building awareness and slowing downÂ
- Perspective changingÂ
- Responding vs. reactingÂ
- Not judging, self-love (loving kindness)Â
- Individualized choiceÂ
- Asking for what I need from family, from doctorsÂ
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. Â
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. Â
Her poster âPracticing Mindfulness to Improve Quality of Lifeâ showcases how she became more aware of how she uses tools she practices to cope with lifeâs 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.Â
“It is important for providers to acknowledge thatâŻpain is part of chronic illness and that mindfulness strategies can âhelp copeâ with the pain,â says Vanessa, adding that mindfulness does not implying that pain is all in the mind and, therefore, mindfulness/therapy can “fix” your mind. âI 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. Itâs a coping strategy.âÂ
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:Â
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 Yearâs 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 â and when you live in the present, the future isnât as scary.” Â
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.” Â
CJ: Why is it important to showcase this poster at a forum like ACR?
Vanessa: “First, itâs 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. Thereâs more than just the physical aspects of chronic illness â thereâs the emotional component. If we donât acknowledge that, it is a disservice to patients. Â Â
Using Mindfulness When You Live with Chronic Illness
Here are a few lessons Vanessa learned along the way about mindfulness.
- Connect with your body. âMeditation is less about fixing something but itâs more about befriending your body,â she says. âItâs about being able to see the bigger picture and feel less isolated.âÂ
- Advocate for yourself. âWhen you see yourself differently, you can say ânoâ intentionally and consciously.âÂ
- Use it as coping strategy. âMindfulness helps you cope with chronic illness. Mindfulness is not a cure, rather itâs a means of coping with chronic illness and bringing your body back into the present.âÂ
- Make it a practice. âIf you practice mindfulness, youâre making a choice to strengthen the connection between your body and yourself,â she explains. âMindfulness helps with many aspects of stress.â Â
- Expand your toolbox. âI still wake up in painâ says Vanessa, âbut 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 â itâs like a detox. It feels like a full-on cleansing.â Â
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 â and share with your doctor. Learn more and sign up here.
Patino-Lydia V. Practicing Mindfulness to Improve Quality of Life. Arthritis & Rheumatology Journal. 2023. https://acrabstracts.org/abstract/practicing-mindfulness-to-improve-quality-of-life/. Â