Watch Now!

Welcome to the Spondylitis Community

Comedy or Tragedy?

One Heroine's Spiritual Journey to Write Her Own Story

By Helen Scharber

Friday, January 01, 2016

Comedy or Tragedy?

How to tell my story of AS… Is it a tragedy - a story of pain, loneliness and despair? Or is it a comedy, featuring ridiculously incompetent medical professionals? Is it a heroine's tale, full of challenges and obstacles to overcome? Or is it perhaps a spiritual journey, in which I realize the greater purpose of all this suffering. I'm 34 now, and over the 12 years that I've had AS symptoms, I've told myself all these stories. On bad days, there is a lot of self-pity.

Why, I've often wondered on those days, do other people my age get to work all day and go out dancing at night, while I can barely keep up with my job, much less a social life? Why did my doctors insist for so many years that there was nothing wrong with me, sending me on an expensive, disappointing, and sometimes shame-inducing search for answers? And why, most of all, isn't our economy and society set up in a way that sees all the good I have to contribute while also cutting me some slack when I'm down?

But on good days I am grateful for the ways AS has helped me become a better person. All this pain and fatigue, the middle-of-the-night wakeups, the frustrating conversations with well-meaning people - all of these things have helped me develop patience. I'm more compassionate now. Living with an invisible illness reminds me that everyone has challenges in their lives, big and small, visible and hidden. I've learned to ask for help (sometimes) because I can now see that the idea of independence is largely an illusion - we're social creatures and we need each other to live. I've also begun meditating and discovered the freedom in paying more attention to what is happening right now.

I finally figured out that I had AS two years ago through an internet search, and my self-diagnosis was confirmed by a rheumatologist. Having a name for this disease has been helpful - doctors take me seriously now, my workplace has made some accommodations, and I understand better the connections between the pain, fatigue, and gastrointestinal symptoms I've had for years. Not wanting to start biologics right away, I tried several alternative approaches, finding nutritional therapy and dietary changes very beneficial. My symptoms aren't gone, but they tend to come and go more quickly now, and my life - while perhaps not normal for a young, single woman - is a lot less dominated by AS.

Over the last couple of years, the stories of people living with AS have given me a great deal of comfort, advice, and hope. The tragic stories have reminded me that I wasn't the only one suffering, and the heroic ones have shown me that having AS is not a death sentence. For my part, I'm finally figuring out that AS - like life - is terrible, beautiful, exciting, boring, scary, and hopeful. I'm writing my own story. 

Print

Spondy What?


Spondyloarthritis affects more people than Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), and Rheumatoid Arthritis, yet it remains relatively unknown.

ALS (30,000)
MS (400,000)
Rheumatoid Arthritis (1.3million)
Spondyloarthritis (2.7million)

infomap_text_new

Our Mission


To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.


Could I Have
Spondylitis?

Think your pain may be caused by spondylitis? Watch our new awareness video and take the quiz!

Why Join the Community?

Connect with others because no one should have to face spondylitis alone.

Patient Resources
& Support

The most comprehensive library of spondylitis information and educational materials.

Learn About Spondylitis

Spondylitis is a relatively unknown disease, but it affects 1 in 100 Americans.

How Can I Help?

There are many ways to get involved in the community. Which one’s right for you?

Locate a Rheumatologist

Use our state-by-state list of patient recommended and board certified rheumatologists.

View the Directory

The electronic Spondylitis Update Newsletter


eSUN

Recent News

Latest Updates

Comorbid Fibromyalgia in Ankylosing Spondylitis, Axial SpA, Psoriatic Arthritis, and Rheumatoid Arthritis.

Posted June 2018

Fibromyalgia (FM) is a relatively well-known musculoskeletal disorder characterized by widespread pain, fatigue, and sleep issues. However, few are aware of its comorbidities. The frequent pain and other symptoms normally associated with FM can be further exacerbated when occurring along with ankylosing spondylitis, axial spondyloarthritis (axSpA),psoriatic arthritis (PsA) or rheumatoid arthritis (RA). A

Read more…
More Articles ›

Video

This AS Life Live!

Posted March 2018

This AS Life Live with Dan Reynolds

Read more…
Learn More ›

Enthesitis

Posted June 2018

More Issues ›

We offer a wide variety of resources for members of the spondylitis community, physicians and others who are interested in learning more about spondylitis.

Stay Informed

Careers

Careers

Visit our careers page for available positions

Contact Us

Spondylitis Association of America

16360 Roscoe Blvd.  Ste. 100
Van Nuys, CA 91406

Email

info@spondylitis.org

Toll Free Hotline

(800) 777-8189 U.S. only
or (818) 892-1616

Give With Confidence

Independent Charities of America