Living with Ankylosing Spondylitis: A Case Study of Chronic Illness

Introduction

Today, approximately 300,000 adults in the United States — representing less than 1% of the American adult population — suffer from ankylosing spondylitis, also known as inflammatory back disease (Ankylosing Spondylitis, 2022). One adult American who has lived with this chronic illness for more than 30 years is Mr. Barnard "Barney" West of Tulsa, Oklahoma, a 70-year-old married Vietnam veteran who is rated 100% service-connected disabled for this condition and multiple others.

This paper provides information on this individual, including a list of his support needs in descending order and a discussion of how to implement relevant objectives of the Healthy People 2030 initiative to increase health in similarly situated individuals. The paper also examines the nursing role from the perspective of an advocate for Barney's acceptance of his ankylosing spondylitis diagnosis and needed treatments, followed by a discussion of the impact of the environment on his health.

Support Needs of the Patient

Ankylosing spondylitis is a debilitating condition that adversely affects Barney's ability to perform many of his basic activities of daily living (Tymms et al., 2022). The patient reports that he was not diagnosed with this disorder by the Department of Veterans Affairs (VA) after his honorable discharge in 1973, which followed a vehicular accident in Vietnam in which a jeep he was riding in overturned. It was not until 1989 that the VA determined he was also suffering from ankylosing spondylitis, discovered during a compensation and rating examination for other disabilities. Those other disabilities included a fused right ankle and a surgical shortening of his left femur to even out his leg lengths due to excruciating back pain. The ankle fusion resulted in a loss of approximately 1½ inches of length in Barney's right leg, and the resulting leg-length discrepancy exacerbated his back condition to the point where he opted to have his left leg shortened in 1991 to alleviate the pain.

Beyond support for basic activities of daily living, Barney also requires assistance in participating in recreational activities outside the home. In the past, he reports enjoying hikes in the woods with his wife and bargain hunting at local garage sales for books and unusual artwork. His ability to take part in these activities has been severely limited in recent years, however, to the point where a drive around the lake as a passenger or a visit to his daughters' homes to see his grandsons are the only regular outings he currently participates in. Barney does report still enjoying video games on his personal computer, including multiplayer games such as Gameloft's March of Empires and War Planet.

Barney also requires ongoing medication — such as ibuprofen or aspirin — and physical therapy, including back massages provided by his wife and spinal decompression achieved by hanging from a metal bar, to manage the numerous symptoms he routinely experiences. These include severe back spasms and, increasingly, difficulties walking even short distances. The patient reports using a cane when absolutely necessary, but refuses to use a walker because it makes him "look weak."

To date, Barney has refused all other prescription and over-the-counter medications due to a lifelong history of alcoholism and drug addiction. He currently self-medicates with various legal cannabis products, primarily smoked flower, and also reports using THC-infused edibles on occasion when the pain is especially intense. At present, all of these support services are provided by his wife.

Barney denies any discernible cognitive decline but concedes that he deliberately forces himself to remain mentally active — through reading and solving complex math problems — out of concern about developing a dementia-like condition, as his father, also a combat veteran, suffered from such a condition prior to his death. Notwithstanding this concern, Barney reports no substantive decline in his mental acuity to date.

Healthy People 2030 and Chronic Pain Management

One of the main objectives of the U.S. government's Healthy People 2030 initiative is the improved management of chronic pain (Reduce chronic pain and misuse of prescription pain relievers, 2022). While Barney needs help with several issues, the adequate management of his pain remains the most pressing priority. Although he refuses conventional prescription analgesics, Barney reports that his cannabis use does not always fully relieve his back and leg pain, and he supplements it with aspirin or ibuprofen along with several hot soaks in the bathtub when this occurs.

This limited course of treatment has allowed Barney to continue participating in his video gaming hobby and the occasional outings described above. Nevertheless, he emphasizes that his quality of life has been significantly diminished as a result of his disabilities. Barney also refuses to undergo further X-rays or laboratory tests from the VA, based on his firm belief that he understands his medical condition better than his healthcare providers do — a constraint that is discussed further in the following section.

Conclusion

The research showed that ankylosing spondylitis is a chronic and debilitating disorder that affects approximately 1% of the American adult population. Although every patient is unique, common support needs for adults with this disorder include assistance with basic activities of daily living and aggressive pain management strategies, both of which are congruent with the objectives of the Healthy People 2030 initiative. The research also showed that while Barney has largely accepted his diagnosis, he could benefit significantly from the advocacy of his primary care nursing staff as well as from environmental enhancements such as a walk-in whirlpool tub and a ramp to replace the stairs at his front door. Addressing these needs in a patient-centered manner — one that respects his history, values, and treatment preferences — offers the most promising path toward improving his quality of life.