Putting A Face to the Disease: Interview with a Rheumatoid Arthritis Patient
When diagnosed with a chronic condition, patients experience all kinds of emotions. These feelings only evolve as patients learn to manage their new lifestyle, medication regimen, and unexpected obstacles.
Shilpa Venkatachalam, PhD, MPH is associate director of Patient-Centered Research at Global Healthy Living Foundation (GHLF) and Creaky Joints (CJ), a patient advocacy group dedicated to inspiring, empowering and supporting arthritis patients to put themselves at the center of their care. GHLF and CJ provide evidence-based education and tools that help patients make informed decisions about the daily and long-term management of arthritis.
In this interview, Shilpa shares her journey with rheumatoid arthritis (RA), including how she felt when she was diagnosed, what it’s like living with RA, the role of the specialty pharmacy, and more.
How did you feel when you were diagnosed with RA?
I felt a host of different emotions when I was diagnosed.
• Relief, because I finally knew what was wrong and that was half the battle won.
• Scared and anxious, because I knew from working at GHLF and CJ, that RA was a chronic condition with systemic inflammation and would require me to take medications possibly for the rest of my life.
• Hopeful, because I also knew from working and speaking to others within the GHLF and CJ community that medications developed today made this condition not what it used to be just 10 years ago. Because of cutting edge research and new medications being developed, people were able to continue aspiring to a good quality of life.
• Sad, because I knew there were things I loved doing that would need adjustment.
• Finally, denial, because, of course, it couldn’t be me – how could I have RA?
What impact does RA have on your daily life?
RA is extremely unpredictable. One day could be great and the next day could be really tough.
It can be difficult to explain to others what it feels like to have RA. Even though your loved ones do their best to support and understand you, accepting they may not quite fully understand can be tough. Simple tasks like walking, doing laundry, and washing dishes can become difficult. Asking help might make you feel frustrated with yourself. In short, RA impacts everyday life in every way.
Do you feel your medication helps improve your quality of life?
Yes. If you find the right medications, which can sometimes take time, they do help improve quality of life. But quality of life doesn’t only come with relief of RA symptoms. It is important to realize medication side effects can affect quality of life. In addition to medications, it is important to eat healthy and find things that make you happy such as a supportive environment. I turned to GHLF and CJ for support. Even though I do research in this area, speaking to others living with this condition helped me feel better, braver, less anxious and more hopeful.
How can a specialty pharmacist help RA patients stay on therapy?
Specialty pharmacists can remind patients about their next refill. They can speak to patients to check in and ask about side effects. They may provide free counseling to patients starting on a new medication or switching a medication. They can help provide a lay of the land, point out what to expect, explain what side effects may emerge and what to do about them. No one likes to read the long insert when receiving a medication – it creates more anxiety to go through the long list of things that can go wrong.
Specialty pharmacists can help patients with the more practical side of things like explaining how to store or take a medication, when the best time is to take it, or what to do if you miss a dose.
What should pharmacy staff know when talking to RA patients?
RA patients are dealing with chronic pain and a host of other side effects. Asking how someone is can help a great deal. RA patients might be nervous, afraid or anxious. Offering advice is great but sometimes offering a kind word empathetically can help more.
Information that is evidence-based can be a big help and pharmacists can help patients access the right information. It’s helpful if pharmacists know about the different classes of medications and can direct people diagnosed with RA to resources and support.
RA can be scary, especially during the bad flares but it can teach you a lot – patience, gratitude, how to deal with frustration, and how to listen to your body.
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What is RA?
• RA is the most common type of autoimmune arthritis, affecting approximately 1.3 million U.S. adults.
• Of those affected, about 75% are women.1
• Although RA may sound like a disease exclusively of the joints, it is a systemic inflammatory disease.
• RA can also cause fever, loss of appetite and fatigue.
• The disease can manifest in other organs, including the lungs, blood vessels, eyes and kidneys.
• One of the most common extra-articular manifestations of RA is the development of nodules, firm lumps under the skin, which present in up to 30% of patients.
Additional CreakyJoints Resources:
1. Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis
2. A Patient’s Guide to Understanding Rheumatoid Arthritis and Heart Disease
3. Webinar: Understanding Rheumatoid Arthritis Pain: What Patients Need to Know
4. GHLF’s FREE COVID-19 Support Program for Chronic Disease Patients and Their Families
5. An Online Package to Better Understand and Manage Chronic Pain
6. ArthritisPower: Keep Track of Your Symptoms and Help Advance Research
Sources
1American College of Rheumatology. Rheumatoid Arthritis. rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Rheumatoid-Arthritis Accessed July 27, 2021.
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