How to Advocate for Yourself with AS: Speak Up

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Living with Ankylosing Spondylitis (AS) can be a constant balancing act. It’s a chronic, inflammatory disease primarily affecting the spine, but it can also impact other joints and organs. Managing AS effectively requires more than just medication; it demands active participation in your own care. This means learning how to advocate for yourself – speaking up, asking questions, and ensuring your voice is heard in every aspect of your health journey. This guide will provide an in-depth, actionable roadmap to becoming your own best advocate, empowering you to navigate the complexities of AS with confidence and clarity.

Understanding the Landscape of AS: Why Self-Advocacy Matters

Ankylosing Spondylitis is often invisible to others, but its impact on your life is profoundly real. Pain, stiffness, fatigue, and limited mobility can fluctuate daily, making it challenging to predict your capabilities. Healthcare systems, while designed to help, aren’t always perfect. Doctors are busy, appointments are short, and the nuances of your individual experience can easily get lost in translation. This is where self-advocacy becomes crucial.

Think of yourself as the CEO of your health. You’re the one with the most intimate knowledge of your symptoms, your responses to treatments, and how AS affects your daily life. Without your active participation, your healthcare team is working with an incomplete picture. Self-advocacy isn’t about being demanding or confrontational; it’s about being informed, prepared, and assertive in communicating your needs and preferences. It’s about building a partnership with your healthcare providers where you are an active and respected member of the team.

Laying the Foundation: Knowledge is Power

The cornerstone of effective self-advocacy is knowledge. The more you understand AS, your body, and the healthcare system, the better equipped you’ll be to communicate your needs.

Demystifying Ankylosing Spondylitis

Take the time to truly understand AS. Go beyond the basic definition.

  • Learn about its mechanisms: What happens in your body when AS flares? Understanding inflammation, enthesitis, and sacroiliitis can help you describe your pain more accurately. For instance, instead of just saying “my back hurts,” you could say, “I’m experiencing sharp, localized pain in my lower back, specifically around my SI joints, which feels consistent with inflammatory pain rather than mechanical.”

  • Identify common symptoms and their variations: While back pain and stiffness are hallmarks, AS can manifest in other ways, like fatigue, eye inflammation (uveitis), bowel issues (IBD), and peripheral joint involvement. Recognizing these connections can help you connect seemingly unrelated symptoms to your AS. For example, if you suddenly develop blurry vision and light sensitivity, knowing about uveitis allows you to immediately inform your rheumatologist or seek urgent ophthalmological care, rather than dismissing it as unrelated eye strain.

  • Understand potential complications: Be aware of long-term risks like spinal fusion, osteoporosis, and heart complications. This knowledge can empower you to ask about preventive measures and screenings. For instance, asking your doctor, “Given my AS, what are the current guidelines for bone density screenings to monitor for osteoporosis?” shows you’re proactive.

  • Research treatment options: Familiarize yourself with different classes of medications (NSAIDs, DMARDs, biologics), physical therapies, and lifestyle interventions. Understand their mechanisms, common side effects, and potential benefits. This allows you to have informed discussions with your doctor about treatment plans. For example, if a new biologic is approved, you can ask your doctor, “I’ve read about [New Biologic Name]; do you think it could be a suitable option for my current symptoms, and what are its pros and cons compared to my current treatment?”

Mastering Your Medical History

Your medical history is your narrative. Keep it meticulously organized and readily accessible.

  • Create a detailed symptom journal: This isn’t just about pain levels. Track:
    • Pain location, intensity (1-10), and character: Is it dull, sharp, burning, aching? Does it radiate?

    • Stiffness: When is it worst? How long does it last? Does movement improve it?

    • Fatigue levels: What triggers it? How does it impact your daily activities?

    • Flare patterns: What seems to trigger a flare? How long do they last?

    • Impact on daily life: How does AS affect your sleep, work, hobbies, and social interactions?

    • Other symptoms: Track any eye issues, skin rashes, digestive problems, or joint pain in other areas.

    • Example: “On Tuesday, felt severe stiffness in my lower back and neck, lasted over an hour after waking. Pain was a throbbing 7/10, making it hard to tie my shoes. Improved slightly after hot shower and gentle stretches. Also noticed increased fatigue that made focusing at work difficult.”

  • Maintain a medication log: Record every medication you take, including:

    • Name and dosage.

    • Start and end dates.

    • Reason for taking.

    • Effectiveness: Did it help? To what extent?

    • Side effects: Any adverse reactions, even minor ones.

    • Example: “Humira, 40mg bi-weekly. Started Jan 2023. Significant reduction in inflammatory back pain and morning stiffness (from 8/10 to 3/10). Occasional injection site redness, no other major side effects.”

  • Keep copies of test results: Blood tests (ESR, CRP, HLA-B27), imaging reports (X-rays, MRIs), and specialist notes. Understand what these results mean in the context of your AS. For example, knowing your CRP levels are elevated during a flare provides objective data to support your subjective pain experience.

  • Document appointments and discussions: Note the date, who you met, what was discussed, decisions made, and any follow-up actions. This creates a clear timeline of your care.

Communicating Effectively: Being Heard, Not Just Speaking

Effective communication is a skill, and it’s particularly vital in healthcare. It involves more than just talking; it’s about being clear, concise, and ensuring your message is understood.

Preparing for Appointments: Your Strategy Session

Every appointment is an opportunity to move your health forward. Don’t waste it.

  • Prioritize your concerns: Before the appointment, list your top 3-5 most pressing issues. Doctors have limited time, so focus on what truly matters. For example, instead of listing 10 minor aches, focus on “worsening fatigue impacting work,” “new hip pain limiting walking,” and “concerns about medication side effects.”

  • Write down your questions: Don’t rely on memory. Have specific questions ready.

    • About symptoms: “What could be causing this new [symptom]? Is it related to AS?”

    • About treatment: “What are the potential side effects of this new medication? How long before I should expect to see results? What’s the plan if this treatment doesn’t work?”

    • About tests: “Why are we doing this test? What will the results tell us? What’s the next step after the test?”

    • About prognosis: “What should I expect in terms of long-term progression with my current treatment plan?”

  • Practice articulating your experience: Rehearse how you’ll describe your symptoms. Use descriptive language from your journal. Instead of “I’m tired,” try “My fatigue is overwhelming; I feel like I’m dragging myself through the day, even after a full night’s sleep, and it significantly impacts my concentration.”

  • Consider bringing a support person: A trusted friend or family member can take notes, ask clarifying questions, and remember details you might miss. Inform your doctor in advance if you plan to bring someone.

During the Appointment: Making Your Voice Count

This is your time to shine as an advocate.

  • Be assertive, not aggressive: State your concerns clearly and calmly. Use “I” statements. “I am concerned about…” or “I feel that…” rather than “You’re not addressing…”

  • Start with your top priority: “Doctor, my main concern today is the persistent fatigue that’s severely impacting my ability to work.” This sets the stage.

  • Be specific with symptoms: Refer to your symptom journal. “My morning stiffness is now lasting over two hours, whereas before it was about 30 minutes, and the pain level is consistently an 8/10 in my lower back.”

  • Ask for clarification: If you don’t understand medical jargon, ask for an explanation in plain language. “Could you explain what ‘enthesitis’ means in simpler terms?” or “When you say ‘monitor,’ what specific signs should I be looking for?”

  • Summarize decisions and next steps: At the end of the appointment, summarize what you’ve understood. “So, to recap, we’re going to try [new medication] for [X weeks], and if there’s no improvement, we’ll consider [next step]. I also need to get [blood test/MRI] before our next appointment in [X time].” This confirms understanding and identifies any miscommunications.

  • Don’t be afraid to ask for alternatives or second opinions: If you’re uncomfortable with a proposed treatment plan, or feel you need more information, it’s okay to say, “I’d like to understand all my options before making a decision. Are there any alternative treatments we could discuss?” or “Would you be open to me seeking a second opinion on this?”

After the Appointment: Follow-Through is Key

Self-advocacy doesn’t end when you walk out the door.

  • Review your notes: Immediately after the appointment, review and expand on your notes while the information is fresh.

  • Action any follow-up tasks: Schedule tests, pick up prescriptions, or research information discussed.

  • Communicate with your team: If you have questions or concerns that arise after the appointment, don’t wait until the next one. Use patient portals, secure messaging, or call the office during business hours. For example, “I started the new medication and am experiencing [side effect]. Is this normal, or should I be concerned?”

  • Update your records: Add new medications, test results, and appointment notes to your centralized medical history.

Navigating the Healthcare System: Beyond the Doctor’s Office

Self-advocacy extends beyond direct interactions with your rheumatologist. It involves understanding and engaging with various facets of the healthcare system.

Building Your Healthcare Team: A Multi-Disciplinary Approach

AS management often requires a team effort.

  • Rheumatologist: Your primary specialist for AS. Ensure they are experienced in AS and that you feel comfortable with them.

  • Physical Therapist: Crucial for maintaining mobility, reducing pain, and improving function. Advocate for a PT who understands AS-specific exercises. For example, “I’m looking for a physical therapist who has experience working with AS patients and can help me with spinal mobility and posture, not just general back exercises.”

  • Occupational Therapist (OT): Can help with adaptations for daily living, work, and hobbies. Advocate for an OT who can assess your specific needs and suggest practical solutions. “I’m struggling with fatigue and joint pain at work. Could an OT help me find ergonomic solutions or energy-saving techniques?”

  • Pain Management Specialist: If pain is a significant issue, they can offer additional strategies beyond your rheumatologist’s scope.

  • Mental Health Professional: Living with chronic pain can take a toll on mental well-being. Advocate for support if you’re struggling with anxiety, depression, or coping strategies. “I’m finding it hard to cope with the chronic pain and fatigue. Could you recommend a therapist who specializes in chronic illness?”

  • Other specialists: Depending on your AS manifestations, you might need an ophthalmologist (for uveitis), a gastroenterologist (for IBD), or a dermatologist (for psoriasis). Ensure your rheumatologist is coordinating care with these specialists.

Understanding Insurance and Costs: Protecting Your Financial Health

Medical costs for chronic conditions can be substantial. Be an advocate for your financial well-being.

  • Know your insurance plan: Understand your deductible, co-pays, out-of-pocket maximums, and what services are covered.

  • Prior authorization: Many medications, especially biologics, require prior authorization from your insurance company. Understand this process and ensure your doctor’s office is handling it promptly. Don’t be afraid to call your insurance company directly to check the status.

  • Medication assistance programs: Many pharmaceutical companies offer patient assistance programs to help with the cost of expensive medications. Research these and ask your doctor’s office about them.

  • Billing and coding: Review your medical bills carefully. If something looks incorrect or confusing, call the billing department for an explanation. Don’t hesitate to question charges.

  • Discuss cost with your doctor: If a prescribed medication or test is financially burdensome, speak up. “Doctor, I’m concerned about the cost of this medication. Are there any equally effective, lower-cost alternatives?”

Navigating Work and Education: Advocating for Accommodations

AS can impact your ability to work or study. Knowing your rights and communicating your needs is essential.

  • Understand workplace rights: Familiarize yourself with laws like the Americans with Disabilities Act (ADA) in the US, which requires employers to provide reasonable accommodations for individuals with disabilities.

  • Communicate with your employer/educator: Have an open, honest conversation about your condition and how it affects your performance. Focus on solutions and accommodations, not just limitations.

    • Examples of accommodations: Flexible work hours, remote work options, ergonomic workstation, frequent breaks, modified duties, accessible parking.

    • Example conversation: “I wanted to discuss how my AS is affecting my work. Specifically, the morning stiffness makes it hard to be productive first thing, and sitting for long periods exacerbates my pain. Would it be possible to adjust my start time by an hour and incorporate more frequent standing breaks throughout the day?”

  • Get documentation: If you need formal accommodations, your employer or school will likely require documentation from your doctor. Ensure your doctor provides clear, comprehensive letters detailing your needs.

Emotional and Social Advocacy: Caring for Your Whole Self

Living with AS isn’t just a physical challenge; it’s an emotional and social one too. Self-advocacy here means acknowledging and addressing these aspects.

Managing Emotional Well-being: Speaking Up for Your Mental Health

The emotional toll of chronic pain, unpredictable flares, and physical limitations is significant.

  • Acknowledge your feelings: It’s okay to feel frustrated, angry, sad, or overwhelmed. Suppressing these emotions can worsen your overall well-being.

  • Seek professional support: Don’t hesitate to talk to a therapist or counselor. They can provide coping strategies, help you process emotions, and address any co-occurring anxiety or depression. Advocate for this support with your doctor. “I’ve been feeling particularly down and overwhelmed lately due to my AS. Do you think talking to a therapist would be beneficial, and could you provide a referral?”

  • Explore mindfulness and stress reduction: Techniques like meditation, deep breathing, and yoga can help manage pain and stress. Advocate for exploring these options with your healthcare team.

Educating Your Support System: Friends, Family, and Colleagues

Those around you can’t fully understand what you’re going through unless you help them.

  • Share information about AS: Provide your loved ones with reliable resources about the disease. Help them understand it’s an invisible illness and that your symptoms can fluctuate.

  • Be specific about your needs: Instead of saying, “I’m not feeling well,” try “I’m having a bad AS flare today, so I won’t be able to [activity] or I might need to take frequent breaks.”

  • Communicate your limitations: Don’t push yourself to do things that will worsen your symptoms to please others. It’s okay to say “no” or to ask for help. “I’d love to help, but lifting that would trigger my back pain. Would you mind doing it, or could we find another solution?”

  • Set boundaries: Protect your energy and time. It’s okay to decline invitations or shorten visits when you’re not feeling well.

Connecting with Peer Support: Finding Your Community

You are not alone. Connecting with others who have AS can be incredibly validating and empowering.

  • Join support groups: Online forums, local chapters of AS associations, or social media groups can provide a safe space to share experiences, ask questions, and learn from others.

  • Share coping strategies: Learn from how others manage their symptoms, advocate with their doctors, or navigate daily challenges.

  • Contribute your own insights: Your experiences are valuable. Sharing them can help others on their AS journey.

Embracing Continuous Advocacy: A Lifelong Journey

Self-advocacy with AS isn’t a one-time event; it’s an ongoing process of learning, adapting, and speaking up.

Staying Informed and Up-to-Date

The landscape of AS research and treatment is constantly evolving.

  • Follow reputable AS organizations: Stay informed about new research, treatment breakthroughs, and management strategies.

  • Attend patient education events: Many hospitals or AS organizations offer seminars or webinars.

  • Question new information: Always discuss new information you find with your healthcare team to ensure it’s relevant and safe for your specific situation.

Adapting Your Advocacy as Your AS Changes

AS is a dynamic condition. Your advocacy needs will change over time.

  • Re-evaluate your treatment plan: As your symptoms evolve, or new treatments become available, proactively discuss adjustments with your doctor.

  • Adjust your lifestyle strategies: What worked for fatigue a year ago might not be as effective now. Be open to new approaches.

  • Be patient with yourself: There will be days when advocacy feels overwhelming. Acknowledge those feelings, but recommit to the process.

Conclusion

Becoming a powerful advocate for yourself with Ankylosing Spondylitis is arguably one of the most impactful steps you can take in managing your condition. It transforms you from a passive recipient of care into an active, informed, and respected partner in your own health journey. By investing in knowledge, mastering effective communication, navigating the complexities of the healthcare system, and tending to your emotional and social well-being, you equip yourself with the tools to demand the best possible care. This isn’t just about getting your needs met; it’s about reclaiming agency over your life, fostering a stronger partnership with your medical team, and ultimately, living a fuller, more empowered life with AS. Your voice is your most potent tool; learn to use it wisely, and never underestimate its power.