Ghosting the Doctor 
with Ankylosing Spondylitis

Why some people with AS stop seeing their rheumatologist— and what to do about it

We’ve ignored calls, left texts unread, and dipped out of a party without saying goodbye. At one point or another, we’ve all ghosted someone. But ditching your doctor when you have ankylosing spondylitis? Not a good move. 

Free Download: You’ve Got Ankylosing Spondylitis: Now What?

Asking your rheumatologist the right questions can help prevent ghosting by making sure you have the information and support to take care of your condition. Download this free guide to the most critical questions to discuss with your doctor, including about your condition, care, treatment, and lifestyle.

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“I ghosted the doctor for too long because I thought I had everything under control. Even when my body ached and things were getting worse, I ignored my body. Big mistake. If your body is telling you it needs help — even in the slightest way, listen to it.” 

— Jed F., ankylosing spondylitis patient

Explore Our Research on 
Ghosting in Ankylosing Spondylitis 

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Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.

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The contents of this website are for informational purposes only and do not constitute medical advice. CreakyJoints.org is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

Why Do People with Ankylosing Spondylitis Ghost Their Doctor?

Discovering you have AS can be a challenging process that can take years. People often struggle to find the right health care professional — going to primary care doctors, chiropractors, physical therapists, orthopedists, and pain management specialists before finally seeing a rheumatologist trained to treat AS. People fight hard to get a diagnosis, undergoing various tests and treatments. So why would anyone with AS then stop seeing their doctor after getting such a hard-won diagnosis? CreakyJoints spoke with rheumatologists and people living with AS to better understand why ghosting occurs and how patients and doctors can work together to address it.

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Lack of knowledge

Fear or denial 

Issues with the doctor

Wanting to treat without medication 

Health care access roadblocks

Improvement with symptoms