Ep 119: What I Wish I Would’ve Known After Diagnosis

A new diagnosis can bring relief, fear, and uncertainty all at once. In this episode, Leila and Deb share advice from the AiArthritis community on what they wish they had known right after being diagnosed with an autoimmune or autoinflammatory arthritis disease. Leila and Deb  explore the importance of trusting your body, especially when tests are inconclusive or symptoms are dismissed. This episode highlights how self advocacy, second opinions, and clear communication with your care team can shape your experience. Community members also reflect on the emotional side of diagnosis, including grief, patience, and the mindset shift that comes with learning to live with chronic illness. Whether you are newly diagnosed or supporting someone who is, this episode offers validation and practical guidance for navigating the early stages of the patient journey.   Episode Highlights: Why trusting your body matters, even when tests are unclear How self advocacy and second opinions can change your care experience The emotional impact of diagnosis and the importance of grace and patience Practical tools like symptom tracking, rest, and shared decision making to support long term management   Links & Resources Have questions about this episode or topics you want to hear us bring to the table? Email us at [email protected]  Donate to Support the Show: www.aiarthritis.org/donate   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts: Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.    Connect with Leila: Tiktok: @Lupuslifestyle.lei   Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning. Connect with Deb: Facebook: @deb.majcherconstien  Instagram: @debconstien Twitter:  @debconstien