Embracing Your Journey with a Recent Axial Spondyloarthritis Diagnosis
It's quite common for young adults, those who are embarking on new journeys in education, family, and career, to be diagnosed with axial spondyloarthritis (axSpA). We understand that grappling with such a diagnosis during what feels like the prime of your life can be daunting. A young nurse of 24 with ankylosing spondylitis (AS) shared, "It's challenging when you're expected to be at your best." Remember, it's natural to feel overwhelmed, but you're not on this journey alone. With the right approach and support, you can lead a fulfilling life with axSpA.
Accept Change
Being diagnosed with axSpA might mean making a few changes in your daily routine and activities. For instance, if your work involves long hours at a desk or physical labor, there might be some adjustments needed to ensure your comfort. Similarly, while some sports may not be suitable, many others can be beneficial and enjoyable for you. Your interactions with loved ones might also evolve over time.
We understand this is a journey, and adapting can be challenging. If you're in a desk job, consider consulting an occupational therapist for a comfortable workspace setup. A physical therapist can guide you towards exercises and sports that are both safe and beneficial. And remember, if you and your family ever need support in navigating these changes, professional counselors and social workers are there to help.
Plan for Pain
Living with axSpA means understanding and addressing pain. Sticking to your treatment plan is crucial. However, it's natural to experience flares from time to time. It's beneficial to have a pain relief strategy in place. While some find relief in using ice packs, and engaging in exercise, stretching, or yoga, others prefer acupuncture, massage, or meditation. Remember, solutions may vary – what's effective once might not be the next time. So, always be equipped with multiple relief options to navigate through the pain.
Practice Emotional Self-Care
Many individuals with enduring health challenges often share a sentiment: "You are more than your condition." It might feel tough, especially when you feel unfamiliar with your own body. However, the core of who you are remains unchanged, even though you're navigating fresh hurdles. When moments get tough, hold onto that thought.
Your condition isn't your entire story. It's okay to recognize and process your emotions but remember not to be too hard on yourself. Lean on others when you need support. And if you ever need to decline assistance, that's perfectly fine too. While you might not have full control over your condition, you do have the power to shape your perceptions and emotions towards it.
Build a Support Network
Building personal connections can be a beacon of hope during challenging times. While friends and family offer invaluable support, sometimes, connecting with individuals who share your experience with axSpA provides unparalleled understanding.
Engaging with an online community or local support group can be a great way to connect with those who truly understand your journey. Consider exploring the Arthritis Foundation's community to find such groups. These forums not only provide emotional upliftment but also offer practical advice and insights on managing life with axSpA, learned from personal experiences.
Stay Positive
Maintaining a positive perspective can truly benefit your brain. When you're in high spirits, your body releases chemicals that help alleviate pain. Conversely, negative thoughts can amplify discomfort. Focusing on the bright side and the good in your life can genuinely enhance your well-being.
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