When I was first diagnosed with rheumatoid arthritis, it felt as though my whole world had turned upside down. I found myself grappling with overwhelming emotions of loneliness and confusion, unsure of where to turn or how to manage this debilitating disease. While medication was a crucial aspect of my treatment, I quickly realized that it alone was not enough. It took years of trial and error to find a medication that worked for me, emphasizing the need for a multifaceted approach to managing my condition.

However, embarking on this journey towards comprehensive treatment was not without its challenges. I was confronted with a myriad of questions that seemed to have no straightforward answers. Where should I even begin? Who should I consult? How can I distinguish reputable treatments from scams? These uncertainties left me feeling lost and unequipped to make informed decisions about my own health.

It became apparent that I needed to delve deeper into the realm of alternative treatments, as traditional medications alone couldn’t address all of my needs. I yearned for a comprehensive understanding of the various options available to me and sought out reliable sources of information. But the road to clarity wasn’t an easy one, as the vast sea of information on alternative treatments often left me feeling overwhelmed and unsure of its credibility.

Fortunately, an opportunity presented itself that allowed me to not only contribute to the advancement of research and guidelines for alternative treatments but also make a meaningful impact on the lives of others in similar situations. When I received the invitation to participate in a panel for The American College of Rheumatology, focusing on setting guidelines for alternative treatments, I couldn’t pass it up. This chance to blend my personal experiences with my role as a patient partner in research was an honor I deeply cherished.

The selection process involved two rigorous rounds of voting, which further underscored the importance and significance of this responsibility. The very fact that my voice was being considered alongside esteemed medical professionals and researchers reaffirmed the value of lived experience in shaping guidelines that would ultimately impact patients’ lives.

These guidelines hold immense weight for patients like myself, as navigating the world of alternative treatments can seem daunting and prohibitively expensive. The mere thought of venturing into uncharted territory, seeking out treatments beyond traditional medication, can be overwhelming. Without clear guidelines and an understanding of the available options, patients may find themselves vulnerable to unproven methods that offer false hope or even pose risks to their well-being.

The overarching goal of the American College of Rheumatology’s guidelines is to provide a comprehensive framework for integrating exercise, rehabilitation, diet modifications, and additional interventions with disease-modifying antirheumatic drugs (DMARDs). By emphasizing an integrative management approach, these guidelines aim to empower individuals with rheumatoid arthritis to make informed decisions about their treatment plans and optimize their overall well-being.

Through exhaustive research and collaboration, the guidelines seek to bridge the information gap that often plagues patients exploring alternative treatments. They consolidate the latest scientific evidence, ensuring that the recommendations are grounded in rigorous research and the collective wisdom of experts in the field. By doing so, these guidelines become a beacon of clarity amidst the sea of uncertainty, guiding patients towards potentially effective interventions while safeguarding them against deceptive or unproven methods.

Moreover, the guidelines recognize and respect the unique journeys that patients undertake while grappling with rheumatoid arthritis. They acknowledge the individuality of each case, highlighting the need for personalized treatment plans that take into account varying factors such as disease severity, patient preferences, and comorbidities.

As a patient advocate and contributor to these guidelines, I am fervently dedicated to ensuring that they serve as a roadmap for individuals with rheumatoid arthritis, guiding them towards safe and effective alternative treatments. I firmly believe that every patient deserves access to reliable information and the opportunity to make well-informed decisions about their health. These guidelines, born out of both lived experiences and scientific rigor, have the potential to transform the lives of countless individuals facing the challenges posed by rheumatoid arthritis.

The purpose of the voting panels:

To develop initial American College of Rheumatology (ACR) guidelines on the use of exercise, rehabilitation, diet, and additional interventions in conjunction with disease-modifying antirheumatic drugs (DMARDs) as part of an integrative management approach for people with rheumatoid arthritis (RA).

Who was involved?

Patients, researchers, clinicians of kinds who treat RA and some ACR staff.