HS at Work

What this is for

Pain, drainage, restricted movement, dressing changes and recovery after procedures can make working with hidradenitis suppurativa difficult. This part of living with HS is rarely discussed — and when it is, it is usually in legal language that sits a long way from an actual working day.

This toolkit starts one step earlier: it helps you record practical effects, turn them into questions and prepare a conversation — with your healthcare team, with occupational health, or at work. If an official body turns out to be the right address afterwards, the last section points you there.

It does not assess your ability to work, determine disability status or provide legal advice. You decide what information to save, print or share.

No account is required. Your entries remain in your browser unless you choose to download them.

What would you like help with today?

Every route leads into the same tools. You can switch at any point, and nothing has to be filled in completely.

• Document how HS affects my work A private record in your browser: concrete working days, concrete limitations — instead of a blanket judgement. →
• Prepare a medical appointment about work Choose the questions you would like to raise with your doctor — and take a summary with you. →
• Prepare a workplace conversation Decide for yourself how much you want to say — and turn that into an editable conversation draft. →
• Plan my return after surgery or a longer absence Collect the open points to clarify before returning. Whether you are ready to return is for your treating team to say. →
• Understand official support routes in Germany Who is responsible for what in Germany — linking to the official information rather than to third-party interpretations. →
• I am not sure where to start Start with the record. Once two or three working days are captured, what the problem actually is usually becomes visible. →

From symptom to consequence

Examples of what the same problem looks like in a work context. They are illustrations, not an assessment of your situation.

Topics that can be discussed

This list is a set of conversation prompts. It helps put your own needs into words before the conversation happens.

• Temporary task modification
• More flexible break timing
• Access to a private changing or hygiene space
• Short-term remote work where the role permits
• Adjusted seating or standing arrangements
• Temporary change to uniform or clothing requirements
• Reduced walking or lifting after a procedure
• Flexible scheduling for medical appointments
• Staged return after absence
• Occupational-health discussion
• Other

None of these is an entitlement this site could establish. What is possible where you work depends on the role, on local circumstances and — where German law applies at all — on a case-by-case assessment only the responsible bodies can make.

How much you say is your choice

Before the toolkit drafts anything, it asks how open you want to be. There are four levels — and one of them deliberately produces no text at all.

1. 1 I want to describe a practical work limitation without naming my diagnosis. The draft describes the task and the limitation, not the condition.
2. 2 I want to disclose that I live with a chronic condition. The draft mentions a chronic condition, but no name and no diagnosis.
3. 3 I want to name hidradenitis suppurativa. The draft names the condition and describes it in one sentence — it contains no further medical detail.
4. 4 I only want to prepare questions and not create a message. No draft is generated. Your answers below stay as conversation notes.

You control what health information you disclose. This toolkit does not decide whether disclosure is appropriate in your individual situation, and does not recommend any of the four levels.

Common questions