Self-Advocacy Tips for Patients Living with Rheumatic Diseases

It is no secret that navigating the healthcare system is challenging, particularly for those who have a chronic disease. Patients with rheumatic conditions often encounter additional challenges, which can come from the complexity of the disease itself, the need to have multiple specialists, and an increasing pressure to have shorter doctor’s visits. Additionally, how a condition presents in different people can be highly diverse, leading to a lack of patient resources that are not given as a “one size fits all” model.

Perhaps more than ever, self-advocacy has become an important part of patient care. Here are a few suggested strategies to help navigate your healthcare, both at a doctor’s office and at home.

Prepare for Your Visits: Organizing Your Thoughts

Clinic visits can be overwhelming, and time can be limited. For a first-time visit, creating a timeline of symptoms and treatments can help ensure that your healthcare professional has a better understanding of your experience with your health so far. Taking the time to reflect on your personal goals for your care is also very important; no goal is too big or too small! Providers always appreciate knowing what is important to you. Lastly, write down a list of questions you want to ask during your visit.

Initial Visits: Setting up Your Healthcare Team

Healthcare is a team sport. It is important to have a rheumatologist you feel comfortable working with, especially because often rheumatology relationships can be long-term, if not lifelong. Use your first few visits to not only explain your symptoms, but to develop a rapport. If you have multiple specialists, it is helpful to bring their names and contact information, so that all your healthcare professionals can coordinate your care more effectively. Your team does not have to exclusively include medical professionals; it can be valuable to have an additional person in the room that you know (a partner, parent, child, or close friend) who can listen, take notes, or think of additional questions to ask during the visit. Remember, two heads are better than one!

Subsequent Visits: Working to Understand Your Disease

Everyone’s experience with their rheumatic disease is unique, and you and your healthcare team will learn together over time how your disease typically acts and evolves. However, not all symptoms are a result of your rheumatic condition. This can be the biggest hurdle to overcome – while you may have an uncommon healthcare condition, you are still allowed to have other common health problems as well. This is where you and your healthcare team can work together to identify what symptoms are from your rheumatic disease, and what symptoms need different testing or management. Over time, many people can learn what symptoms “feel like” their disease, and what symptoms do not. You should always feel empowered to express this, as your personal experience is the most valuable test of all.

Beyond Visits: Remember You Are Not Alone

Fortunately, in the digital age there is easier patient access to electronic medical records, test results, and healthcare professionals than ever before. Additionally, the internet has created a space where people with rare conditions can connect and share their experiences from all around the world. While the road to diagnosing and managing your rheumatic condition may continue to have its twists and turns, never has there been a better time to build a support network. Continue to ask questions and evolve your personal goals of care with your healthcare team.