What People With Spondylitis Wish They Had Known Earlier | MySpondylitisTeam

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What People With Spondylitis Wish They Had Known Earlier

Posted on October 12, 2020

Article written by
Heather Lapidus Glassner

Diagnosis can provide a sense of relief to members, especially after many years of experiencing back pain and other symptoms without knowing the cause. However, diagnosis also marks the start of a new normal — learning how to manage a painful chronic illness. Spondylitis is progressive, with symptoms that worsen over time. The earlier you begin treatment and learn ways to manage chronic pain — exercise, good posture, a healthy diet — the better you’ll feel, and the more likely you are to slow disease progression.1

It’s not surprising that there are many things members wish they had known earlier, particularly what they could have done differently.

Member Survey

MySpondylitisTeam conducted an online survey in 2019. In the survey, MySpondylitisTeam asked members what they wished they knew beforehand that would have helped them manage their spondylitis along the way. Many had never heard of spondylitis before their diagnosis and wished they had known more about what it was and how to manage it.

In Their Own Words

As part of the survey, MySpondylitisTeam asked members for details about what they regret not knowing sooner. Here are some quotes from members on what they wish they had learned earlier.

I Wish I Had Known …

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 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.”

Knowledge and Support

When you join MySpondylitisTeam, you gain a social support network of more than 46,000 members who understand what it’s like living with ankylosing spondylitis, axial spondyloarthritis, psoriatic arthritis, or other types of spondylitis. Members are quick to welcome those who are newly diagnosed, offering tips, sharing their own experiences, and providing moral support on bad days as you navigate life and treatment options with spondylitis. No matter how long you have been living with a spondylitis diagnosis, there is more to learn from others with the condition.

What do you wish you had known earlier? What would you tell others who have just been diagnosed with spondylitis or who are still seeking a diagnosis? Comment below or post on MySpondylitisTeam.

Read more about results from the MySpondylitisTeam survey:

References

  1. Living with ankylosing spondylitis — National Institute of Arthritis and Musculoskeletal and Skin Diseases

Heather has over two decades of experience in market research. She has conducted social listening and quantitative survey research across a variety of conditions. Learn more about her here.

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