How to Advocate for HS Care: Be Heard – Your Definitive Guide to Effective Hidradenitis Suppurativa Advocacy

Living with Hidradenitis Suppurativa (HS) presents unique challenges, not just physically, but in navigating the healthcare system to receive the comprehensive, empathetic care you deserve. For many, the journey from initial symptoms to accurate diagnosis and effective management is fraught with frustration, misunderstanding, and a sense of being unheard. This in-depth guide is designed to empower you with the knowledge, strategies, and confidence to become your own most powerful advocate in the HS care journey. We’ll move beyond generic advice to provide actionable insights and concrete examples, ensuring you’re not just speaking, but truly being heard.

The Foundation of Advocacy: Understanding HS and Your Rights

Before you can effectively advocate, you must first be well-informed. Understanding HS itself – its fluctuating nature, varied presentations, and potential complications – is paramount. Equally important is knowing your rights as a patient.

Deep Dive into Hidradenitis Suppurativa: Beyond the Surface

HS is a chronic, inflammatory skin condition characterized by painful nodules, abscesses, and tunnels (sinus tracts) typically in areas where skin rubs together, such as the armpits, groin, and under the breasts. It’s not simply “acne” or “boils,” and often has systemic implications.

• Variable Presentation: HS manifests differently in individuals. Some experience mild, infrequent flare-ups, while others endure severe, persistent lesions that significantly impact quality of life. This variability often leads to diagnostic delays and a lack of understanding from healthcare providers who may only be familiar with typical cases.

• Progressive Nature: Without effective management, HS can progress, leading to more widespread lesions, increased pain, scarring, and reduced mobility. Early intervention is key to mitigating this progression.

• Comorbidities: HS is frequently associated with other health conditions, including metabolic syndrome, inflammatory bowel disease, arthritis, and depression. A holistic approach to care must consider these potential comorbidities.

• Impact on Mental Health: The chronic pain, visible lesions, and unpredictable nature of HS can significantly impact mental health, leading to anxiety, depression, and social isolation. Addressing mental health is an integral part of HS care.

Actionable Insight: Compile a concise, factual summary of your personal HS journey. Include when symptoms started, how they’ve progressed, what treatments you’ve tried (and their outcomes), and how HS impacts your daily life, including your mental well-being. This becomes your “elevator pitch” for new healthcare providers.

Your Rights as a Patient: The Unspoken Contract

Every patient has fundamental rights that form the bedrock of effective advocacy. These rights vary slightly by region but generally include:

• Right to Information: You have the right to receive clear, understandable information about your diagnosis, treatment options (including risks, benefits, and alternatives), and prognosis.

• Right to Participate in Decisions: You have the right to be involved in all decisions regarding your care. This is not just about agreeing to a treatment, but actively contributing to the treatment plan.

• Right to Privacy and Confidentiality: Your medical information is private.

• Right to Respectful Care: You have the right to receive care that respects your dignity, privacy, and cultural values, free from discrimination.

• Right to Second Opinion: You are entitled to seek a second opinion regarding your diagnosis or treatment plan.

• Right to Lodge a Complaint: If you feel your rights have been violated or you’ve received inadequate care, you have the right to lodge a formal complaint.

Actionable Insight: Familiarize yourself with the specific Patient Bill of Rights or similar legislation in your country or region. Print it out and keep it accessible. Refer to it if you feel your rights are not being upheld.

Strategic Preparation: Before the Appointment

Advocacy begins long before you step into the doctor’s office. Meticulous preparation is the cornerstone of an impactful appointment.

The Power of Documentation: Your HS Journal

A detailed HS journal is your most potent advocacy tool. It provides objective data, demonstrates consistency, and prevents crucial details from being overlooked.

• Symptoms Tracking:
  • Date and Time: Record the exact date and time of symptom onset or changes.

  • Location and Size: Note the exact location of lesions (e.g., “right armpit,” “inner thigh near groin crease”). Estimate size if possible (e.g., “pea-sized,” “golf-ball sized”).

  • Appearance: Describe the lesions (e.g., “red, swollen nodule,” “draining abscess,” “tunnel formation,” “scarring”). Take discreet photos if comfortable and appropriate, ensuring good lighting and clarity, to show progression over time.

  • Pain Level: Use a consistent scale (e.g., 0-10, where 0 is no pain and 10 is the worst imaginable pain).

  • Associated Symptoms: Note any fever, fatigue, joint pain, or other systemic symptoms.

• Flare-Up Triggers: Track potential triggers such as stress levels, diet, hormonal changes (e.g., menstrual cycle), certain clothing, or environmental factors. This can help identify patterns and inform management strategies.

• Treatment Effectiveness:

  • Medication: List all medications taken (prescription and over-the-counter), including dosage and frequency. Note side effects and perceived effectiveness.

  • Procedures: Document any procedures (e.g., incision and drainage, laser therapy, surgery), including the date and outcome.

  • Lifestyle Changes: Record any dietary modifications, exercise routines, or stress management techniques and their impact on your HS.

• Impact on Daily Life:

  • Sleep: How does HS affect your sleep quality?

  • Mobility: Does HS restrict your movement or ability to perform daily tasks?

  • Work/School: Has HS caused you to miss work or school, or affected your performance?

  • Social Life/Mental Health: How does HS impact your social interactions, mood, and overall mental well-being?

Concrete Example: Instead of saying “My armpit hurts a lot,” your journal allows you to say, “On July 15th, a new, painful nodule developed in my left armpit, measuring approximately 2cm. Pain level was a constant 7/10, making it difficult to lift my arm. It started draining purulent fluid on July 17th. This flare-up coincided with a particularly stressful week at work.”

Researching Healthcare Providers: Beyond the General Practitioner

While your GP is often the first point of contact, specialized care is crucial for HS.

• Dermatologists: Look for dermatologists with a stated interest or specialization in inflammatory skin conditions or complex dermatology. Some may even mention “Hidradenitis Suppurativa” on their profiles.

• HS Clinics/Centers of Excellence: Increasingly, hospitals are establishing specialized HS clinics or centers of excellence. These multidisciplinary teams often include dermatologists, surgeons, pain specialists, and mental health professionals. This is often the ideal scenario for comprehensive care.

• Surgeons: Depending on the severity and location of your HS, a plastic surgeon, general surgeon, or even a colorectal surgeon (for perianal HS) may be part of your care team. Ensure they have experience with HS excisions and wound management.

• Pain Management Specialists: Chronic pain is a significant component of HS. A pain management specialist can offer advanced strategies beyond standard analgesics.

• Mental Health Professionals: Therapists, psychologists, or psychiatrists experienced in chronic illness management can be invaluable for coping with the emotional burden of HS.

Actionable Insight: Utilize online directories, patient advocacy group recommendations (e.g., HS Foundation), and hospital websites to identify specialists. When calling to make an appointment, explicitly ask if the doctor has experience treating HS. You can even ask about their approach to managing severe cases or their multidisciplinary team.

Formulating Your Questions and Goals

Going into an appointment with clear objectives ensures you cover all your concerns.

• Prioritize: List your most pressing concerns first. What do you absolutely need to address in this appointment? Is it pain management, a new lesion, a treatment discussion, or a referral?

• Specific Questions:

  • “Given my current symptoms, what are the most appropriate treatment options for me?”

  • “What are the potential side effects of [specific medication/treatment]? How will we manage them?”

  • “What is the expected timeline for improvement with this treatment?”

  • “What are the long-term implications of my HS, and how can we prevent progression?”

  • “Are there any clinical trials suitable for my condition?”

  • “What resources (e.g., support groups, patient education materials) do you recommend?”

  • “Can you explain the rationale behind this treatment decision in terms I can understand?”

  • “What is the plan if this treatment doesn’t work?”

  • “How often should I expect follow-up appointments?”

• Set Realistic Goals: You might not solve every problem in one appointment. Aim for progress. Perhaps this appointment’s goal is to get a referral to a specialist, or to discuss starting a new medication.

Concrete Example: Instead of “I want my HS to get better,” your goal could be, “To discuss starting biologics for my HS and understand the full treatment plan, including potential side effects and monitoring, and to obtain a referral for a pain management specialist.”

During the Appointment: Mastering the Art of Communication

This is where your preparation pays off. Effective communication is a two-way street, but as the patient, you hold the key to initiating clear, concise, and impactful dialogue.

Be Concise, Yet Comprehensive

Healthcare providers often have limited time. Learn to convey essential information efficiently without omitting critical details.

• Lead with Your Main Concern: “Doctor, my primary concern today is the persistent pain from this new abscess in my groin, and I’d like to discuss options beyond antibiotics.”

• Refer to Your Journal: “As my journal indicates, this specific area has flared up three times in the last month, with increasing pain levels, reaching an 8/10 on the scale.”

• Visual Aids: Show photos from your journal if appropriate. “These photos show the progression of the lesion over the past two weeks.”

• Active Listening: Pay attention to what the doctor says. Don’t interrupt them unnecessarily.

• Summarize and Clarify: At the end, summarize your understanding of the discussion and the agreed-upon next steps. “So, if I understand correctly, we’re going to try a course of clindamycin, and if there’s no improvement in two weeks, we’ll re-evaluate and consider incision and drainage, correct?”

• Don’t Be Afraid to Ask for Clarification: If medical jargon is used, ask for a simpler explanation. “Could you explain what ‘systemic inflammation’ means in relation to my HS?”

Actionable Insight: Practice explaining your main concerns and questions to a friend or family member before the appointment. Time yourself to ensure you can convey the crucial information in a few minutes.

Assertiveness, Not Aggression

Advocacy requires assertiveness – standing up for your needs and rights respectfully but firmly.

• Use “I” Statements: Focus on your experience and feelings. “I feel my pain is not being adequately managed,” rather than “You’re not managing my pain.”

• State Your Needs Clearly: “I need a clearer understanding of why this treatment is being recommended over others I’ve researched.”

• Challenge Respectfully: If you feel dismissed or misunderstood, address it directly. “I understand you see many patients, but I’m concerned that my HS isn’t being viewed as the chronic, debilitating condition it is for me. I’d appreciate it if we could discuss the long-term management plan.”

• Bring a Support Person: A trusted friend or family member can take notes, remember details, and offer emotional support. They can also advocate on your behalf if you’re too overwhelmed. Inform the doctor beforehand that you’ve brought someone for support.

• Address Dismissal Directly: If a doctor dismisses your pain or symptoms, you might say, “I understand that HS can be challenging to treat, but the level of pain and discomfort I’m experiencing is significantly impacting my quality of life. What steps can we take to address this specifically?”

Concrete Example: If a doctor suggests your HS is “just a few boils,” you can assertively respond, “While they may appear as boils, these are actually manifestations of Hidradenitis Suppurativa, a chronic inflammatory disease that causes deep, painful lesions and tunnels. It’s not just a superficial issue, and it’s significantly impacting my daily life.”

Discussing Treatment Options and Shared Decision-Making

You are a partner in your care. Shared decision-making is crucial, especially with a complex condition like HS.

• Openly Discuss Preferences: “I’ve researched biologics and I’m interested in understanding if they might be a suitable option for me, given my history with other treatments.”

• Question Rationale: “Why is this particular antibiotic being prescribed over others I’ve tried? Is there a reason we’re not considering a different class of medication?”

• Express Concerns: “I’m concerned about the potential side effects of this treatment, particularly [specific side effect]. What measures can we take to mitigate that risk?”

• Explore Alternatives: “If I’m not comfortable with this option, what other treatments could we consider?”

• Discuss Goals of Treatment: What does successful treatment look like to you? Is it reduced pain, fewer flare-ups, or improved scarring? Ensure your goals align with the doctor’s proposed plan.

Actionable Insight: Before the appointment, research various HS treatment options (topicals, oral antibiotics, biologics, surgery, laser, lifestyle modifications). Understand their general pros and cons so you can have an informed discussion.

Post-Appointment: Following Through and Navigating Challenges

Advocacy doesn’t end when you leave the clinic. Follow-through and persistence are key to effective long-term HS management.

Maintaining Your Records and Journal

Continue to diligently update your HS journal. This ongoing record is invaluable for tracking progress, identifying patterns, and preparing for future appointments.

• Document Appointments: Note the date of the appointment, the doctor’s name, key discussion points, diagnoses, treatment plans, prescriptions, referrals, and any instructions given.

• Track Prescriptions: Create a clear list of all current medications, dosages, and prescribing doctors. Note when refills are due.

• Monitor Treatment Response: Continue to track how your body responds to new treatments, including improvements, lack of improvement, and any side effects. This data helps your doctor make informed adjustments.

Concrete Example: After an appointment, you might write: “July 20, 2025: Dr. Lee. Discussed new abscess in right armpit. Prescribed 2-week course of Doxycycline 100mg BID. Advised warm compresses. Next appointment scheduled for August 5th to review Doxycycline effectiveness and discuss potential biologic if no improvement.”

Following Up and Communicating Between Appointments

Don’t hesitate to reach out if concerns arise between appointments.

• Patient Portals/Secure Messaging: Many healthcare systems offer secure online portals for messaging your doctor’s office. This is ideal for non-urgent questions, reporting minor side effects, or clarifying instructions.

• Calling the Office: For more urgent concerns (e.g., severe side effects, rapidly worsening symptoms), call the office and clearly explain the situation. Be prepared to leave a detailed message.

• Be Specific: When communicating, refer to your journal. “I started the Doxycycline on July 20th. Today, July 24th, the pain in my right armpit has increased to a 9/10, and the lesion appears larger and more inflamed than when I saw the doctor. What should I do?”

• Understand Response Times: Be aware of the typical response time for your doctor’s office. For emergencies, always seek immediate medical attention.

Actionable Insight: Ask your doctor’s office about their preferred method of communication for non-urgent matters and what constitutes an urgent concern that warrants a call.

When to Seek a Second Opinion or Change Providers

Sometimes, despite your best advocacy efforts, you may feel your needs aren’t being met.

• Lack of Progress: If your HS is not responding to treatment, or if it’s progressing despite adherence to the plan, a second opinion can offer fresh perspectives.

• Feeling Dismissed or Unheard: If you consistently feel your concerns are being trivialized, your pain is not being addressed, or your doctor is unwilling to engage in shared decision-making, it’s a strong sign to seek new care.

• Limited Knowledge: If your doctor demonstrates a lack of understanding of HS or its complexities, especially in more severe cases, seek a specialist.

• Poor Communication: If communication is consistently unclear, rushed, or unhelpful, it hinders effective care.

• Referral Refusal: If you request a referral to a specialist (e.g., dermatologist, surgeon) and your current doctor refuses without a clear, justifiable medical reason, it’s a red flag.

Concrete Example: “After six months of this treatment, my HS continues to worsen, and I feel my doctor isn’t exploring all available options or truly understanding the impact on my life. I’ve decided to seek a second opinion from the HS clinic at [Hospital Name].”

Actionable Insight: When seeking a second opinion, be prepared to share all your medical records, including your detailed HS journal. Be transparent with your current doctor about your decision, if comfortable, but prioritize your health.

Beyond the Clinic: Broader Advocacy and Support

Advocacy for HS extends beyond individual appointments. Engaging with the wider HS community and understanding systemic issues can further empower you.

Connecting with Support Groups and Patient Communities

• Shared Experiences: Support groups (online or in-person) provide a safe space to share experiences, frustrations, and coping strategies. You’ll realize you’re not alone.

• Practical Advice: Other patients can offer invaluable practical advice on managing symptoms, finding specialists, and navigating insurance.

• Emotional Support: The emotional burden of HS is immense. Connecting with others who truly understand can significantly reduce feelings of isolation and improve mental well-being.

• Finding Resources: Groups often share information about new treatments, clinical trials, and patient advocacy initiatives.

Concrete Example: “I learned about the new HS treatment center at the university hospital from a member of my online support group. They also shared tips on how to prepare for the first appointment there.”

Educating Others: Friends, Family, and Colleagues

While personal, HS impacts your entire life, and educating those around you can foster understanding and support.

• Be Selective: You don’t need to educate everyone. Choose trusted individuals who are genuinely interested and supportive.

• Simple Explanations: Use clear, non-technical language. “HS is a chronic skin disease where deep, painful lumps form, often in skin folds. It’s not contagious and isn’t caused by poor hygiene.”

• Focus on Impact: Explain how HS affects you – your pain levels, energy, mobility, and emotional state. “Sometimes I have to cancel plans because a flare-up makes it too painful to move or wear certain clothes.”

• Set Boundaries: You are not obligated to explain your condition to anyone. It’s your personal information.

Actionable Insight: Prepare a short, simple explanation of HS that you can use when people ask about your condition, or when you need to explain why you might be limited in certain activities.

Engaging in Broader Advocacy Efforts

Consider contributing to the wider HS community if you feel up to it.

• Patient Surveys and Research: Participate in surveys or contribute to patient registries to help researchers understand HS better and identify unmet needs.

• Advocacy Organizations: Support or volunteer with organizations dedicated to HS awareness and research. They often lobby for better funding, diagnostic tools, and treatment access.

• Sharing Your Story (Voluntarily): If comfortable, sharing your journey (e.g., in a blog, video, or through patient organizations) can help destigmatize HS and inspire others.

• Policy Change: Understand how healthcare policies impact HS care. If you’re passionate, you can even engage in contacting legislators or participating in public awareness campaigns.

Concrete Example: “I participated in a patient survey organized by the HS Foundation, hoping my experience would contribute to a better understanding of treatment effectiveness and quality of life for HS patients.”

Conclusion: Your Voice Matters

Advocating for your HS care is an ongoing journey that demands knowledge, preparation, assertiveness, and resilience. It’s about recognizing your inherent right to comprehensive, compassionate care and actively participating in every decision that shapes your health outcomes. By becoming well-informed about HS, meticulously documenting your experiences, preparing strategically for appointments, communicating effectively, and persistently following through, you transform from a passive recipient of care into an empowered partner. Your voice is your most potent tool in this journey; learn to wield it effectively, and you will be heard.