Elevating the Patient Voice
By Natalie E . Azar, MD
Assistant Professor of Medicine and Rheumatology
NYU Langone Medical Center
It was an honor for me to speak at the Arthritis Foundation reception in Atlanta to kick off a week of learning about what’s new and happening in the world of rheumatology.
One of the things I enjoy most about being a rheumatologist is developing relationships with my patients. Since rheumatic diseases can be complex and unique to each person, I spend a lot of time with my patients, over a long period of time. It’s important to me to take the time to listen to their needs. That’s why I focused on elevating the patient voice in silent rheumatic diseases for my keynote address.
Often, patients don’t feel like they are being heard by their healthcare providers, but they are the experts in how they feel and what’s most important to them.
As an NBC News Medical Contributor and Assistant Professor of Rheumatology at NYU Langone, I try to increase awareness about the impact that rheumatic diseases have on the daily lives of patients. It can be such a struggle, especially when it is often hard to see the symptoms. That’s why many patients feel like they have an invisible disease. Fatigue is one of the most difficult symptoms to address in rheumatic diseases, but it cannot be ignored.
Some key takeaways from my presentation for my fellow healthcare providers:
- We need to pay closer attention to all symptoms, especially to ones that may seem “non-clinical,” for example, complaints of fatigue, stress and anxiety. These symptoms may be overlooked or considered a symptom of the main diagnosis (i.e. Lupus, RA,). However, they can severely limit a patient’s ability to perform their daily tasks and make it more difficult to manage the disease.
- As providers, we want the best medical outcomes and quality of life for our patients. Validating the patient experience and educating them about their disease will increase their understanding of direct and indirect symptoms. This knowledge will empower patients to recognize early warning signs of symptoms that worsen their disease, persist for an extended time or weaken their ability to cope.
- We need to empower the patient to trust his/her own experiences and use his/her symptoms as early warning devices to avoid a worsening condition, especially when it comes to fatigue.
If you’re a patient with a rheumatic condition, please, don’t stay silent about your fatigue symptoms. Speak up and advocate for yourself. You are the expert of your body and your pain.
- Keep talking to your doctor about your fatigue symptoms and any post-exertion malaise. Don’t ignore these symptoms.
- Try to keep an activity log to monitor how you’re feel after performing various activities so you can track any persistent fatigue symptoms.
- Get educated about pacing and energy conservation for daily self-management of your fatigue. A referral to an occupational therapist could help you determine what works best for your schedule.
"Fostering open lines of communication between the doctor and patient is key to addressing the silent complaints in rheumatic diseases. Also vitally important, is making sure you can advocate for yourself."
I had the pleasure of meeting an amazing patient advocate, Shannan O’Hara-Levi, at the reception and learned more about her story of growing up with arthritis. She’s sharing her story at the annual meeting with a patient poster abstract to validate and elevate the importance of the patient voice in discussions among health care providers, patient advocates and related organizations at important meetings such as this one. Meet this fierce advocate committed to raising her voice for people living with arthritis just like her.
Representing the Patient Voice
By Shannan O’Hara-Levi
It’s exciting to represent the Arthritis Foundation community at the American College of Rheumatology Annual Meeting in Atlanta. I’m proud to share my story at this important conference to help elevate the patient voice, like Dr. Natalie Azar spoke about.
I am honored to be a Patient Poster presenter at this meeting.
“It’s truly powerful as a patient to attend this event and tell my story. Including patients in the conversation as a norm is a powerful way to improve outcomes and influence the direction of research, treatment guidelines and resource development.”
I welcome a seat at the table and sincerely hope that this program continues and grows to include more patient voices.
Navigating our journey of living with arthritis is not an easy thing to do, but we do it every minute of every day. This year at the Arthritis Foundation booth, I’ll be joined by eight other patients with different types of arthritis and life experiences as we talk about the most important partner in our journey with arthritis.
It’s so important to have a good support system and I’m fortunate to have my husband, Dustin as my partner in the journey. He is an active partner in my daily self-care to manage my arthritis. I wake up every day, not knowing how I’ll feel or what kind of pain I might have, but my husband is the one constant in my daily life. He always encourages me to put my health first.
I’m excited to share some big news for our arthritis community - a new podcast from the Arthritis Foundation is coming! Tune in to the conversation and become empowered with the Live Yes! With Arthritis podcast. Hosted by patients for patients.
Go to www.arthritis.org/LiveYesPodcast to check out the trailer preview! The first episode will be out on November 19th. Stay tuned!