How to Disclose HS at Work: HR Tips

Navigating Disclosure: A Definitive Guide to Discussing Hidradenitis Suppurativa (HS) in the Workplace

Living with Hidradenitis Suppurativa (HS) is a profound personal journey, often characterized by physical discomfort, emotional distress, and a constant negotiation of daily life. For many, the workplace represents a significant arena where the challenges of HS can intersect with professional responsibilities and aspirations. The decision of whether, when, and how to disclose HS to an employer or HR department is deeply personal, yet it holds considerable implications for an individual’s career trajectory, well-being, and ability to perform their job effectively. This comprehensive guide aims to demystify the process, offering clear, actionable advice and concrete examples to empower individuals with HS to navigate workplace disclosure with confidence and strategic foresight. It moves beyond generic advice, providing a detailed roadmap to ensure that your health needs are understood and appropriately accommodated, fostering a supportive and productive work environment.

The Nuances of Disclosure: Why and When to Share Your HS Journey

The act of disclosing a chronic health condition like HS at work is not a one-size-fits-all scenario. It’s a strategic decision influenced by the severity of your condition, the nature of your job, the culture of your workplace, and your personal comfort level. While there’s no legal obligation to disclose every medical detail, understanding the benefits and considerations of doing so is paramount.

The “Why”: Benefits of Thoughtful Disclosure

Disclosing HS, when done strategically, can unlock a range of benefits that directly support your health and professional life.

• Access to Reasonable Accommodations: This is often the primary driver for disclosure. Many countries, including the United States with the Americans with Disabilities Act (ADA), require employers to provide reasonable accommodations for individuals with disabilities, which can include chronic conditions like HS if they substantially limit a major life activity. Without disclosure, your employer may not be aware of your needs and therefore not obligated to provide adjustments.
  • Example: Sarah, a graphic designer, experiences frequent HS flares in her underarms, making prolonged computer work uncomfortable. After disclosing to HR and her manager, she requested an ergonomic desk setup that allows her to alternate between sitting and standing, and permission for more frequent short breaks to attend to wound care.
• Protection Against Discrimination: Disclosure, particularly through formal channels like HR, can offer a layer of legal protection. If your employer is aware of your condition and you experience discrimination related to it, you have a stronger basis for legal recourse.
  • Example: John, who works in retail, has visible HS lesions on his hands. After disclosing to HR, if his manager were to consistently deny him customer-facing roles due to his condition, knowing John’s HS status strengthens his claim of discrimination.
• Building Understanding and Empathy: Open communication can foster a more empathetic and supportive work environment. When colleagues and managers understand the challenges you face, they are more likely to offer understanding, flexibility, and support during difficult periods.
  • Example: Maria, a project manager, sometimes experiences fatigue and pain during severe HS flares. After a general discussion with her team about managing a chronic condition (without going into graphic detail about HS itself), her colleagues were more understanding when she occasionally needed to adjust meeting times or work from home.
• Reduced Stress and Anxiety: Carrying the burden of a secret can be emotionally taxing. Disclosing, even partially, can alleviate this psychological load, allowing you to focus more energy on your work and managing your health.
  • Example: David, an accountant, spent months worrying about how to explain his frequent restroom breaks for wound care. Once he confided in HR and his direct manager, he felt a huge weight lifted, reducing his overall workplace stress.
• Improved Performance and Productivity: When your work environment is tailored to your needs, you can manage your symptoms more effectively, leading to improved concentration, reduced discomfort, and ultimately, better job performance.
  • Example: Emily, a factory worker, found standing for long periods exacerbated her HS flares. After receiving a sit/stand stool as an accommodation, she was able to work her full shift with significantly less pain, increasing her productivity and attendance.

The “When”: Timing Your Disclosure

The timing of disclosure is a strategic decision. It’s not always necessary to disclose during the interview process, especially if your HS is well-managed and doesn’t immediately impact your ability to perform essential job functions.

• Proactive Disclosure (Before Issues Arise): If your HS is prone to unpredictable flares, or if you anticipate needing accommodations in the near future, proactive disclosure can set a foundation of understanding. This allows HR and your manager to plan for potential needs without the urgency of an immediate crisis.
  • Example: A new employee, Mark, has moderate HS that occasionally requires him to take a day or two off. During his onboarding, he informs HR of his chronic condition and discusses the potential for needing occasional flexibility or remote work days, setting expectations from the outset.
• Reactive Disclosure (When an Issue Arises): Many individuals choose to disclose only when their HS begins to impact their work performance, attendance, or requires specific accommodations. This can feel more immediate but is still a valid approach.
  • Example: Lisa starts experiencing severe HS flares that make it difficult to sit for her entire 8-hour shift. At this point, she decides to approach HR to discuss her condition and request a standing desk.
• During the Hiring Process (Careful Consideration): Generally, it’s advisable to disclose during the hiring process only if your HS genuinely affects your ability to perform essential job functions and you will immediately require accommodations to do so. Otherwise, it’s often better to wait until after you’ve been hired. Employers cannot ask about your medical conditions before making a job offer, but once an offer is extended, they can ask certain medical questions if they are job-related and consistent with business necessity.
  • Example (When to disclose during hiring): If a job requires heavy lifting and your HS prevents you from lifting more than a small amount, you might need to disclose during the hiring process to discuss if reasonable accommodations can be made for those essential functions.

  • Example (When not to disclose during hiring): For an office job, if your HS is generally well-managed and you don’t foresee needing immediate accommodations, there’s no need to disclose it during the interview.

The “How”: A Step-by-Step Guide to Effective Disclosure

Once you’ve decided to disclose, the “how” becomes critical. A thoughtful, prepared approach can make all the difference in how your disclosure is received and acted upon.

Step 1: Understand Your Rights and the Law

Before engaging with HR, familiarize yourself with relevant disability discrimination laws in your region (e.g., ADA in the US, Equality Act in the UK). This knowledge empowers you to advocate for yourself effectively and understand the employer’s obligations.

• Key takeaway: HS, especially in moderate to severe forms, can qualify as a disability under these laws, entitling you to reasonable accommodations. This means your employer cannot discriminate against you because of your HS, as long as you can perform the essential functions of your job with or without reasonable accommodation.

Step 2: Decide What and How Much to Share

You are not required to provide exhaustive medical details or graphic descriptions of your condition. Focus on how HS affects your ability to perform your job and what accommodations you might need.

• What to share:
  • That you have a chronic medical condition (Hidradenitis Suppurativa).

  • How your HS symptoms impact your work performance or attendance (e.g., “HS causes painful skin lesions that can limit my mobility,” or “During flares, I experience fatigue and pain that might require me to adjust my schedule or take short breaks”).

  • The specific accommodations you are requesting.

• What you don’t need to share (unless relevant to accommodation):

  • Graphic details of lesions or wound care.

  • Your full medical history unrelated to workplace impact.

  • Your personal feelings or emotional struggles (unless you choose to, and it’s professionally appropriate).

• Example: Instead of saying, “My armpit boils are so painful I can’t lift my arm,” you might say, “Due to a chronic skin condition, I experience pain and limited mobility in my arms, which sometimes makes tasks requiring overhead reaching challenging. I’d like to discuss if an ergonomic adjustment or a modification of certain duties could help.”

Step 3: Gather Supporting Documentation (Optional, but Recommended)

A letter from your healthcare provider (dermatologist or GP) can significantly strengthen your request for accommodations. This letter should:

• Confirm your diagnosis of HS.

• Briefly explain how the condition impacts your major life activities (e.g., walking, sitting, lifting, concentration).

• Suggest specific reasonable accommodations that would enable you to perform your job duties. Your doctor does not need to disclose your full medical history.

• Example: A letter stating, “Ms. Smith has Hidradenitis Suppurativa, a chronic inflammatory condition that can cause pain and fatigue. To help Ms. Smith perform her job duties as a data entry clerk, I recommend a flexible work schedule to allow for medical appointments and short, frequent breaks to manage discomfort.”

Step 4: Choose Your Point of Contact

For formal disclosure and accommodation requests, HR is typically the most appropriate department. They are trained in disability laws and confidentiality. While you may inform your direct manager, always start with HR for official processes.

• Why HR? HR is legally bound by confidentiality regarding medical information. Direct supervisors, while they may be understanding, might not have the same training or legal obligations regarding protected health information.

• Example: Instead of telling your manager directly about your detailed medical needs, initiate the conversation with HR and then work with HR to inform your manager about necessary accommodations.

Step 5: Schedule a Meeting and Prepare Your Talking Points

Request a private meeting with an HR representative. Prepare what you want to say in advance. This could be a mental outline or even written notes.

• Opening Statement: “I’d like to discuss a confidential health matter that occasionally impacts my work and explore potential accommodations.”

• Brief Explanation: “I have a chronic condition called Hidradenitis Suppurativa (HS). During flares, it can cause symptoms like [mention general symptoms relevant to work, e.g., pain, fatigue, limited mobility] that can affect my ability to [specific job duty].”

• Focus on Solutions: “To help me continue to perform my job effectively, I would like to discuss some potential accommodations, such as [list specific requests].”

• Reassurance (if applicable): “I am committed to my role here and want to ensure I can continue to contribute fully.”

• Example of Meeting Script Snippet: “Thank you for meeting with me. I wanted to speak with you confidentially about a chronic health condition I manage, called Hidradenitis Suppurativa. While I generally manage it well, during certain periods, I experience increased pain and fatigue, which can make prolonged sitting difficult. I was hoping we could discuss the possibility of a flexible work arrangement, perhaps a sit-stand desk, or even occasional remote work options during flares, to ensure I can continue to be productive.”

Step 6: Engage in the Interactive Process

The “interactive process” is a legal term referring to the dialogue between an employer and employee to determine effective reasonable accommodations. Be prepared to discuss your needs and be open to different solutions.

• Be specific about your needs: Vague requests are harder to accommodate.
  • Instead of: “I need more breaks.”

  • Try: “During severe flares, I may need to take 10-15 minute breaks every 2-3 hours to manage discomfort and perform wound care.”

• Be flexible: The employer may suggest alternative accommodations that are equally effective.

• Document everything: Keep a record of all communications, meetings, and agreed-upon accommodations. Note dates, names, and key decisions.

  • Example: After your meeting, send a follow-up email summarizing what was discussed and agreed upon. “Following our meeting on [Date], I understand we discussed [Accommodation 1, Accommodation 2] to support my HS management at work. I appreciate your willingness to implement these.”

Step 7: Explore Specific Reasonable Accommodations for HS

Accommodations for HS can be diverse, addressing physical discomfort, fatigue, and the need for hygiene.

• Workstation Modifications:
  • Padded or ergonomic chairs: To reduce pressure on affected areas, especially for those with gluteal or perineal involvement.

  • Sit-stand desks: Allows for alternating positions, crucial for managing pain from prolonged sitting or standing.

  • Access to a private, well-ventilated space: For discreet wound care or changing bandages.

  • Example: A call center employee with HS in their inner thighs might request a specialized ergonomic chair with extra padding or a gel cushion to alleviate pressure.

• Flexible Scheduling and Leave:

  • Flexible start/end times: To accommodate morning stiffness or fatigue, or to allow for appointments.

  • Adjusted break schedules: More frequent or longer breaks for wound care, medication, or rest.

  • Remote work options: During severe flares or recovery from procedures, working from home can reduce commuting stress and provide a more controlled environment.

  • Intermittent FMLA leave (if applicable): For managing unpredictable flares and medical appointments without exhausting all sick leave.

  • Example: An editor might negotiate to work from home two days a week, particularly during flare-ups that make commuting or prolonged office presence challenging.

• Clothing and Uniform Adjustments:

  • Modifications to uniform requirements: Allowing looser-fitting or specific fabric clothing to prevent friction and irritation.

  • Example: A nurse whose uniform rubs against an affected area might request a slight alteration to the uniform or permission to wear a specific type of undershirt to prevent irritation.

• Reduced Physical Demands:

  • Temporary reassignment of tasks: If certain job duties exacerbate symptoms (e.g., heavy lifting, prolonged standing/walking).

  • Assistance with physically demanding tasks: If possible, having colleagues assist with tasks that cause undue strain.

  • Example: A warehouse worker with HS in their groin area might temporarily be assigned to a lighter duty role or given assistance with tasks involving frequent bending or lifting.

• Environmental Controls:

  • Temperature control: Some individuals find certain temperatures exacerbate their HS. Access to personal fans or control over office temperature can be helpful.

  • Example: An employee working in an open-plan office might request a desk near a window or fan to manage heat and humidity, which can sometimes aggravate HS.

• Hygiene and Supplies:

  • Access to clean, accessible restrooms: For wound care.

  • Permission to keep a small “HS kit” at their desk: Containing bandages, wipes, pain relievers, and any necessary topical treatments.

  • Example: An HR professional ensures there’s a small, private first-aid room or a discreet restroom available for an employee who needs to change dressings frequently.

Step 8: Maintain Open Communication and Follow-Up

The accommodation process is often ongoing. Your needs may change, or the effectiveness of an accommodation might need re-evaluation.

• Regular check-ins: Periodically assess if the accommodations are working effectively.

• Report issues promptly: If an accommodation isn’t working or new challenges arise, inform HR immediately.

• Example: After a month of using a new ergonomic chair, a project manager might check in with HR to confirm it’s helping and discuss if any further adjustments are needed.

Addressing Common Concerns and Potential Challenges

Disclosing HS at work can bring anxieties. Understanding and preparing for potential challenges can alleviate some of this stress.

Fear of Stigma and Discrimination

It’s natural to worry about how colleagues and managers might react. While legal protections exist, unconscious bias can be a reality.

• Strategy: Focus on educating, not oversharing. Frame your disclosure around performance and professional impact, not just personal suffering. Emphasize your commitment to your work.

• Example: If a colleague asks about frequent breaks, you can politely say, “I have a chronic health condition that requires me to take short breaks for self-care to ensure I can maintain my focus and productivity throughout the day.” You are not obligated to disclose HS to colleagues.

Employer Pushback or Reluctance

Some employers may be uninformed about HS or resistant to providing accommodations.

• Strategy: Be prepared with your legal rights and documentation. Clearly articulate how the requested accommodation is “reasonable” and does not pose an “undue hardship” on the business. If necessary, seek advice from a disability advocacy organization or an employment lawyer.

• Example: If an employer claims a sit-stand desk is too expensive, you can point out that many such desks are available at various price points, and the cost might be less than the impact of lost productivity due to discomfort.

Maintaining Confidentiality

While HR is bound by confidentiality, information can sometimes leak.

• Strategy: Clarify with HR who will be informed about your condition and why (e.g., only your direct manager for accommodation purposes). Request that medical information be kept in a separate, confidential file.

• Example: During your HR meeting, explicitly state, “I understand this information is confidential, and I would appreciate it if only those directly involved in approving and implementing my accommodations are made aware of the specifics of my condition.”

Beyond Disclosure: Sustaining Your Well-being at Work with HS

Disclosure is a significant step, but managing HS at work is an ongoing process that extends beyond a single conversation.

Self-Advocacy as an Ongoing Practice

Your needs may evolve. Continuously advocate for yourself, monitoring how your accommodations are working and requesting adjustments as needed.

• Example: A new medication might change the timing of your symptoms, requiring a slight modification to your break schedule. Don’t hesitate to initiate a conversation with HR about this.

Prioritizing Self-Care

Managing HS symptoms actively outside of work directly impacts your ability to thrive professionally.

• Adherence to Treatment Plan: Stick to your medication regimen, wound care, and doctor’s appointments.

• Stress Management: Workplace stress can trigger flares. Develop healthy coping mechanisms like mindfulness, exercise (if possible), or therapy.

• Healthy Lifestyle: Diet and exercise, as advised by your healthcare provider, can play a role in managing HS severity.

• Adequate Rest: Fatigue is a common HS symptom. Prioritize sleep to mitigate its impact.

Building a Support System

While confidentiality at work is important, having a support system outside of work, whether it’s family, friends, or an HS support group, can be invaluable.

• Example: Connecting with other individuals who have HS can provide practical tips for managing symptoms in various settings, including the workplace.

Conclusion

Disclosing Hidradenitis Suppurativa at work is a journey that requires careful consideration, strategic planning, and unwavering self-advocacy. It’s about empowering yourself to create a workplace environment where your health needs are acknowledged and supported, allowing you to focus on your professional growth and contributions. By understanding your rights, preparing thoroughly, communicating effectively with HR, and continuously advocating for your well-being, you can transform a potential challenge into an opportunity for a more inclusive and productive work experience. Remember, your health is paramount, and a supportive workplace is one that values both your capabilities and your well-being.