Guide to Pursuing an Autoimmune Diagnosis

By Cynthia Adinig

1. Document Your Symptoms
Keep a Health Journal: Start by documenting your symptoms, no matter how small or intermittent they might seem. Include details like the time of day they occur, their intensity, and anything that seems to trigger or relieve them. For example, with Sjögren's, note dryness (mouth, eyes), fatigue, or joint pain.

2. Research and Educate Yourself
Understand the Conditions: Learn about autoimmune illnesses including common symptoms, potential complications, and typical diagnostic criteria. Knowledge is power, and understanding these conditions will help you communicate more effectively with healthcare providers.

3. Seek Out Supportive Healthcare Providers
Find Allies in Healthcare: Look for doctors known for their understanding and support of autoimmune patients, especially those who are sensitive to the nuances of treating Black women. This might include rheumatologists, immunologists, or even primary care physicians with a focus on autoimmune diseases.
Ask for Recommendations: Reach out to patient advocacy groups, online forums, or local community health networks for recommendations on empathetic healthcare providers.

4. Prepare for Your Doctor's Appointments
List Your Symptoms and Questions: Bring your health journal and a list of questions or concerns to your appointments. Be clear about how your symptoms impact your daily life and why you suspect an autoimmune disorder.
Advocate for Yourself: Be prepared to assertively communicate your symptoms and concerns. If you feel dismissed, don't hesitate to seek a second opinion.

5. Request Specific Tests
Ask for Autoimmune Testing: Specific blood tests can help diagnose certain autoimmune conditions. Request these tests if they're not initially offered.
Follow-up: Ensure you understand the testing process, what the results mean, and the next steps after receiving your results.

6. Utilize Community and Online Resources
Join Support Groups: Connect with others who are navigating similar health challenges. Support groups, whether in-person or online, can provide invaluable advice and emotional support.
Leverage Online Platforms: Websites and social media groups dedicated to autoimmune diseases can offer resources, advocacy tips, and community support.

7. Be Persistent and Patient
Persistence Pays Off: The road to diagnosis can be long and frustrating, but persistence is key. Continue to advocate for yourself, even when faced with setbacks.
Practice Self-Care: Navigating this process can be emotionally and physically taxing. Remember to take care of yourself, prioritize your well-being, and seek out emotional support when needed.