Ankylosing What? Healthy Strategies for Coping with Ankylosing Spondylitis
Living with a chronic condition like ankylosing spondylitis (AS) is not just a physical challenge; it also poses significant psychological and emotional hurdles. AS is a form of inflammatory arthritis with an autoimmune component that primarily affects the spine, leading to inflammation, pain, and stiffness. In some cases, the spine can fuse, causing significant stiffness and restrictions in mobility and daily functioning.
The emotional toll of managing a chronic illness can be overwhelming, impacting all facets of one’s life to include work, relationships, friendships, hobbies, and more.
Challenges:
1. Pain and Discomfort: The persistent pain and discomfort associated with AS can take a toll on mental well-being. Coping with daily pain can lead to frustration, anxiety, depression, cognitive and memory impairment. Chronic conditions can be visible or invisible. Sometimes the condition is visible (when it has progressed to cause structural changes in the spine and posture), others might understand it more; however, much of the time the symptoms are not visible which makes it harder for others to understand the extent that the pain impacts life.
2. Uncertainty and Fear: The unpredictable nature of AS can instill fear and uncertainty about the future. Individuals may worry about the progression of the disease, potential complications, and how it may affect their relationships and daily life. This constant worry can contribute to heightened stress levels.
3. Social Isolation: Chronic conditions often lead to social isolation as individuals may find it challenging to participate in social activities or maintain the same level of engagement with friends and family. Feelings of loneliness and isolation can exacerbate emotional challenges.
4. Body Image and Self-Esteem: Changes in physical appearance and limitations in mobility can impact body image and self-esteem. Individuals with AS may struggle with self-acceptance and face societal pressures related to physical appearance and abilities.
Coping Strategies:
1. Educate Yourself: Knowledge is empowering. Our health system is better equipped to handle acute illness and not chronic illnesses despite the statistic that indicates more than two-thirds of Americans have a chronic health condition. We have to be our own provider and advocate which can be especially hard when you feel drained by pain and the frustration of dealing with a chronic condition. Finding a trusted friend, loved one, or professional advocate to help you navigate the health care system can be helpful.
2. Build a Support System: Establishing a strong support system is crucial. Connect with friends, family, or support groups to share your experiences and feelings. Having a support network can provide emotional reassurance and practical assistance. Share openly. When we share about our experience we feel less alone and re-establish the very primal need to belong.
3. Mindfulness and Relaxation Techniques: Incorporate mindfulness and relaxation techniques into your daily routine. Practices such as deep breathing, meditation, or yoga can help manage stress, reduce anxiety, and improve overall mental well-being.
4. Seek Professional Help: Chronic health conditions are multi-factorial and so you need a multi-factorial team, too.
Orthopedic doc/osteopaths/chiropractors can help with the physical management of the condition
Physical therapists/physical trainers can help focus on what you CAN do to strengthen the body.
Functional nutritionists can help given the autoimmune inflammatory and gut health components of this condition and how food impacts our immune and inflammatory response.
Psychologists can help process the difficult emotions and feelings of missing out and grieving. Psychologists can also help with the lifestyle changes like sleep, stress, behavioral change and coping strategies that focus on realistic goals and modifying expectations while still focusing on what you can do and how you can still find joy in life.
Living with ankylosing spondylitis presents physical, social, and emotional challenges that come with a diagnosis and implications of an often invisible, chronic condition. Building a strong support system, creating a health care team, practicing mindfulness, and adopting adaptive coping strategies are essential components in navigating the emotional landscape of AS. By addressing the various aspects of the condition, individuals can enhance their overall well-being and lead fulfilling lives despite the challenges posed by ankylosing spondylitis.