About Spondylitis and Its Symptoms

• “I thought it was just back stiffness. When I would give my kids a bath and couldn’t stand up, or be fatigued and couldn’t move my neck, I never ever thought of this.”
• “I thought my back issue was because of my job.”

How Painful It Can Be

• “Knowing the different types of pain I would experience and how fast I would deteriorate would have been a help.”
• “Symptoms and how to manage pain — very debilitating.”
• “How much it was going to hurt, what meds were most effective and what exercises were most effective.”

To Advocate for Myself With Doctors

• “I wish that I had known to push the doctors for a firm diagnosis, not just treatment for arthritis or feeling like a hypochondriac.”
• “I wish that I would have pushed for a diagnosis. I felt like I was going crazy because, for each symptom, I was told there was nothing wrong with me.”

My Diagnosis

• “I wish I had seen a rheumatologist sooner.”
• “I wish that I knew earlier because I would have gotten the proper treatment and medication to slow the progress of my AS.”
• “Just getting a diagnosis would have helped. Then I could have sought out the right treatment.”

What Changes To Expect Over Time

• “How the condition progresses.”
• “How to stop the progression earlier.”
• “How to deal with the ongoing issues, what I should eat to reduce inflammation, the fact that it was going to get worse. Support groups. Informed doctors.”

How Diet and Exercise Could Help

• “That staying active is key.”
• “Knowing about exercise would have helped a lot.”
• “How important exercise and diet are in controlling this condition.”

How To Better Manage the Disease

• “It would have been helpful to have medication and exercises to help.”
• “Be seen immediately after falls. Physical therapy is a must. Good self-care is number one.”
• “How to better take care of myself when having a flare.”
• “More information about what I could do to help ease symptoms.”

What Changes To Make in Life

• “Do’s and don’ts for everyday living.”
• “I wish I would have known how it would change my life.”
• “To stop doing the manual work I was engaged in.”

About Other Health Conditions Commonly Found With Spondylitis (Comorbidities)

• “The connection to my IBD [inflammatory bowel disease] and uveitis. Understanding the connections is so important.”
• “That you can get it in different parts of your spine and how debilitating it is.”
• “Discussion on how it affects your life and affects other body parts and joints.”