How to Explain HS to Employers: Disclosure

Navigating the Professional Landscape with Hidradenitis Suppurativa: A Practical Disclosure Guide for Employees

Living with Hidradenitis Suppurativa (HS) presents unique challenges, not least of which is deciding how and when to discuss your condition with an employer. HS is a chronic, inflammatory skin condition characterized by painful lesions, abscesses, and scarring, primarily in areas where skin rubs together. Its unpredictable flares, potential for discomfort, and the societal stigma surrounding skin conditions can make workplace interactions daunting. However, effective communication and strategic disclosure can transform a potentially isolating experience into one of support and understanding. This guide provides a definitive, in-depth, and actionable framework for explaining HS to employers, empowering individuals to navigate their professional lives with confidence and advocate for their needs.

Understanding Your Rights and the “Why” of Disclosure

Before approaching your employer, it’s crucial to understand your rights and the strategic benefits of disclosure. In many regions, laws protect individuals with chronic illnesses, including HS, from discrimination and mandate reasonable accommodations. Disclosing your condition, when done thoughtfully, isn’t about seeking special treatment, but about creating an equitable and supportive work environment where you can perform optimally.

Why Disclose? The Strategic Advantages:

• Access to Reasonable Accommodations: This is the primary driver for many. If your HS impacts your ability to perform job functions, disclosure is often a prerequisite for requesting modifications to your work environment, schedule, or duties.
  • Concrete Example: You experience significant pain from sitting for extended periods due to HS lesions on your buttocks. Disclosing allows you to request a standing desk or a specialized ergonomic chair. Without disclosure, your employer may not understand the need for such adjustments.
• Preventing Misunderstandings and Building Trust: Unexplained absences, frequent restroom breaks, or visible discomfort can lead to assumptions or concerns from employers and colleagues. Proactive disclosure provides context, fosters empathy, and builds a foundation of trust.
  • Concrete Example: You frequently need to use the restroom to change dressings. Without explaining HS, your supervisor might perceive this as a lack of focus or engagement. A clear, concise explanation of your condition and the need for hygiene breaks can prevent this misinterpretation.
• Reducing Stress and Anxiety: Hiding a chronic condition can be emotionally taxing and contribute to stress, which can, in turn, exacerbate HS flares. Openness can alleviate this burden, allowing you to focus more on your work and well-being.
  • Concrete Example: Constantly worrying about a lesion leaking through clothing and being discovered creates immense stress. Disclosing the potential for such occurrences to a trusted manager can reduce this anxiety, knowing they are aware and can offer discretion if needed.
• Protecting Your Job: If your performance is impacted by your HS and you haven’t disclosed, you may be vulnerable to disciplinary action. Disclosure, especially when coupled with a request for accommodations, demonstrates your commitment to your role and your proactive approach to managing your health.
  • Concrete Example: You miss several days due to a severe flare-up requiring hospitalization. If your employer is unaware of your chronic condition, these absences could lead to performance concerns. If you’ve already disclosed and discussed the unpredictable nature of HS, your employer is more likely to be understanding and work with you on a solution.

When to Disclose: Timing is Everything

The “when” of disclosure is as critical as the “how.” There’s no universal perfect moment, as it depends on your comfort level, the severity of your HS, and the nature of your role.

Pre-Employment (Application/Interview Stage):

Generally, it is not recommended to disclose HS during the initial application or interview process unless:

• You require an accommodation for the interview itself.
  • Concrete Example: If you need an extended break during a multi-hour interview or a specific type of seating due to pain, you would disclose only what is necessary to facilitate that accommodation. “I have a medical condition that requires me to take a short break every hour. Would it be possible to schedule breaks accordingly?”
• Your experience with HS directly relates to the job’s requirements or the company’s mission. This is rare, but possible in roles focused on disability advocacy or healthcare.
  • Concrete Example: Applying for a role at an organization that supports individuals with chronic illnesses, where your personal experience with HS could be seen as an asset. In this case, you might subtly weave it into your cover letter or interview response, focusing on resilience, problem-solving, and empathy gained from your experience.

After a Job Offer is Extended (Before Starting):

This is often a strategic time to disclose, especially if you anticipate needing accommodations from day one. At this stage, the employer has already decided they want to hire you based on your qualifications.

• Concrete Example: After receiving a job offer for a position that requires prolonged standing, you might state, “I’m very excited about this opportunity. I wanted to let you know that I have a chronic skin condition, Hidradenitis Suppurativa, which can occasionally cause discomfort with prolonged standing. I’d like to discuss potential ergonomic solutions, such as access to a sit-stand desk, to ensure I can perform effectively.”

Once Employed (Proactive or Reactive):

This is the most common scenario. You can disclose proactively to establish understanding, or reactively when symptoms begin to impact your work.

• Proactive Disclosure (Recommended for establishing a supportive environment): If your HS is generally well-managed but you anticipate occasional flares or the need for minor adjustments, a proactive discussion can be beneficial.
  • Concrete Example: You’ve been in your role for a few months and feel comfortable with your manager. You might say, “I wanted to share with you something personal that occasionally affects my health. I have a chronic skin condition called Hidradenitis Suppurativa. While it’s generally well-managed, there might be times when I need a little flexibility, like an extra restroom break or to adjust my seating for comfort. I wanted to make you aware of it so there’s no misunderstanding.”
• Reactive Disclosure (When symptoms are impacting work): If your HS symptoms are already affecting your performance, it’s vital to disclose promptly to address the issue. Delaying can make it appear as if you’re making excuses.
  • Concrete Example: You’ve been struggling to meet deadlines due to pain and fatigue from a severe flare. You would initiate a conversation: “I wanted to speak with you about my recent performance. I’ve been experiencing a significant flare-up of my chronic condition, Hidradenitis Suppurativa, which has impacted my ability to focus and meet deadlines. I’m actively managing it with my doctor, and I’d like to discuss what accommodations might help me get back on track and prevent this in the future.”

How to Explain HS: Clarity, Conciseness, and Confidence

The key to successful disclosure is to be clear, concise, and confident, focusing on the impact of HS on your work and potential solutions, rather than dwelling on graphic medical details.

1. Prepare Your Message:

• Keep it Brief and Factual: Avoid overwhelming your employer with too much medical jargon or unnecessary personal details. Focus on what they need to know to understand and support you.

• Anticipate Questions: Think about common misconceptions about skin conditions (e.g., “Is it contagious?” “Is it due to poor hygiene?”). Be ready to address these directly and reassuringly.

• Identify Your Needs: Before the conversation, clearly define what, if any, accommodations or flexibility you might need.

2. Choose the Right Audience:

• Direct Manager: Often the first point of contact, especially for day-to-day accommodations or immediate needs.

• Human Resources (HR): For more formal requests, documentation, or if you feel uncomfortable speaking directly with your manager. HR can also advise on company policies and legal obligations.

• Doctor’s Note (Optional but Recommended): A brief letter from your doctor can lend credibility and provide a clear, concise medical overview. This is particularly useful for formal accommodation requests.

  • Concrete Example for a Doctor’s Note:
    • To Whom It May Concern,

    • This letter is to confirm that [Employee Name] is under my care for Hidradenitis Suppurativa (HS), a chronic inflammatory skin condition. HS can cause periodic flare-ups resulting in pain, inflammation, and reduced mobility. During these times, certain accommodations may be beneficial to help [Employee Name] perform their job duties effectively. These may include, but are not limited to, flexible work hours, additional short breaks, or ergonomic adjustments to their workspace. Please be assured that HS is not contagious. I am available to provide further clarification if needed.

    • Sincerely,

    • [Doctor’s Name/Specialty]

3. The Conversation – Step-by-Step Approach:

• Request a Private Meeting: Don’t spring this conversation on your employer in a casual setting. Schedule a dedicated time to ensure privacy and their full attention.

• Start with a Clear Statement:

  • “I wanted to discuss a personal health matter that occasionally impacts my work. I have a chronic condition called Hidradenitis Suppurativa, or HS.”
• Provide a Brief, Understandable Explanation: Focus on the nature of the condition and its impact, not gory details.
  • “It’s a chronic inflammatory skin disease that causes painful lesions and inflammation, primarily in skin folds. It’s not contagious, nor is it caused by poor hygiene.”

  • “It can lead to pain, discomfort, and sometimes requires frequent dressing changes.”

• Explain the Potential Impact on Work (Be Specific and Connect to Job Functions):

  • “Occasionally, a flare-up might cause significant pain, making it difficult to sit for long periods, or require me to take more frequent restroom breaks for wound care.”

  • “There might be times when I experience fatigue, or need to attend a medical appointment during work hours.”

  • “In severe instances, it might lead to a need for a day or two of absence, similar to managing any chronic illness.”

• Focus on Solutions and Accommodations (Empower Your Employer): This is where you shift from problem to solution. Suggest practical ways they can support you.

  • “To ensure I can continue to perform my job effectively, I might benefit from [mention specific accommodations].”

  • “For example, a sit-stand desk would greatly help manage discomfort during long desk periods.”

  • “Having some flexibility with my start and end times on occasion, or the option to work remotely during a severe flare, would allow me to better manage symptoms and still complete my tasks.”

  • “Access to a private restroom for quick dressing changes would also be very helpful.”

• Reiterate Your Commitment: Emphasize your dedication to your role and your desire to be a productive employee.

  • “I am fully committed to my work and want to ensure my condition doesn’t hinder my performance. I’m actively managing my HS with my healthcare team, and I’m confident that with these minor adjustments, I can continue to be a valuable asset to the team.”
• Open the Floor for Questions: Encourage them to ask questions and address any concerns they may have.
  • “Do you have any questions about this, or is there anything else you’d like to discuss?”
• Document the Conversation (For Your Records): Following up with a brief email summarizing the discussion and agreed-upon accommodations can be beneficial for both parties.
  • Concrete Example for Follow-up Email:
    • Subject: Follow-up on Our Conversation Regarding My Health

    • Dear [Manager’s Name],

    • Thank you for taking the time to speak with me today regarding my chronic health condition, Hidradenitis Suppurativa (HS). As we discussed, HS can occasionally present with symptoms such as pain and inflammation that may impact my ability to sit for extended periods or require additional short breaks for wound care.

    • I appreciate your understanding and willingness to consider accommodations. To recap, we discussed [list agreed-upon accommodations, e.g., the possibility of a sit-stand desk, flexibility for medical appointments, and access to a private restroom for hygiene needs]. I believe these adjustments will greatly assist me in maintaining my productivity and comfort in my role.

    • Please let me know if you require any further information from my doctor. I look forward to continuing to contribute effectively to the team.

    • Best regards,

    • [Your Name]

Specific Accommodation Examples for HS

While individual needs vary, here are concrete examples of common and effective accommodations for individuals with HS:

• Flexible Seating/Ergonomics:
  • Actionable: Request an ergonomic chair with extra padding, a donut cushion, or a sit-stand desk to alleviate pressure on affected areas.

  • Example Scenario: You have a flare in your gluteal region. Instead of suffering in silence, you request a specialized cushion or the ability to alternate between sitting and standing throughout the day.

• Breaks and Rest Periods:

  • Actionable: Request additional, shorter breaks for wound care, medication application, or to simply move around and relieve pressure.

  • Example Scenario: Your lesions require frequent dressing changes. You arrange with your manager for 5-minute breaks every 2-3 hours to attend to hygiene needs without feeling rushed or embarrassed.

• Flexible Work Schedule/Remote Work:

  • Actionable: Explore options for flexible hours, compressed workweeks, or remote work days during severe flares or for medical appointments.

  • Example Scenario: A severe flare makes commuting painful. You discuss with your employer the possibility of working from home for 1-2 days, ensuring you can still complete tasks while prioritizing self-care.

• Access to Facilities:

  • Actionable: Request access to a private restroom or a quiet space for personal care needs.

  • Example Scenario: You need to change dressings discreetly. Your employer designates a specific, private restroom for your use, or ensures a private area is available.

• Dress Code Adjustments:

  • Actionable: If a uniform or specific dress code exacerbates your HS, discuss minor modifications.

  • Example Scenario: A tight uniform rubs against a sensitive area. You request permission to wear a slightly looser fit or a different fabric for comfort, explaining the medical necessity.

• Environmental Controls:

  • Actionable: If heat or humidity trigger flares, discuss workplace temperature control or access to personal fans.

  • Example Scenario: Your office is consistently warm, leading to increased sweating and irritation. You ask for a personal fan or for the thermostat to be adjusted, explaining the impact of heat on your HS.

• Reduced Physical Demands/Task Modification:

  • Actionable: If your job involves heavy lifting or prolonged strenuous activity that aggravates your HS, discuss a temporary or permanent modification of duties.

  • Example Scenario: A new project requires frequent lifting, which causes pain in your underarm flares. You discuss with your manager reassigning some lifting tasks to a colleague or using equipment to assist with lifting.

Maintaining Confidentiality and Ongoing Communication

Once you’ve disclosed, maintaining confidentiality and open communication is vital.

• Who Knows? You have the right to control who knows about your condition. Typically, only your direct manager and HR need to be informed on a “need-to-know” basis. You are not obligated to tell colleagues, although you may choose to share with trusted individuals.

• Regular Check-ins: Periodically check in with your manager to ensure accommodations are working effectively. HS symptoms can fluctuate, so your needs might change over time.

  • Concrete Example: After a few weeks of using a sit-stand desk, you might say, “The sit-stand desk has been incredibly helpful. I just wanted to check in and see if you have any questions or if there’s anything else we need to adjust.”
• Be Proactive with Changes: If your HS worsens or your needs change, initiate a new conversation before it significantly impacts your work.
  • Concrete Example: Your current medication isn’t as effective, and you anticipate needing more time off for doctor’s appointments. You schedule a meeting with your manager to discuss this upcoming change and explore new solutions.

Overcoming Stigma and Building Empathy

One of the greatest challenges of living with HS is the stigma. By disclosing thoughtfully, you contribute to a more inclusive workplace.

• Education is Key: Often, misunderstandings arise from a lack of knowledge. By providing concise, factual information, you empower your employer to be empathetic.

• Focus on Capability: Always emphasize that HS is a medical condition, and while it requires management, it does not diminish your capabilities or commitment to your job.

• Lead by Example: By demonstrating professionalism and resilience despite your challenges, you set a powerful example and encourage a supportive environment.

Explaining Hidradenitis Suppurativa to an employer requires a strategic approach rooted in self-awareness, clear communication, and a focus on solutions. By understanding your rights, timing your disclosure effectively, and articulating your needs with confidence, you can create a work environment that not only accommodates your health but also fosters your professional growth and well-being. This empowers you to manage your condition effectively while excelling in your career.