Living with hidradenitis suppurativa (HS) can be a challenge — especially in the work environment. This chronic inflammatory skin condition is characterized by painful, recurring bumps that develop in the hair follicles, typically in the armpits, groin, buttocks, and underside of the breasts. The discomfort of the cysts, nodules, and sinus tracts that HS creates — as well as concerns like discharge or odor during flare-ups — can be particularly difficult while juggling a full- or part-time job.
Many people struggle with the symptoms of HS, also called acne inversa, at work at one time or another. In fact, many myHSteam members have reported missing workdays because of the condition. “I’ve stayed home all day!” wrote one member. “I got off work today because I can’t move.” Another expressed their frustration, writing, “I hate missing work because of my HS.”
Some people find that supportive co-workers are particularly helpful when dealing with HS on the job. “Glad I work with some awesome girls who understand because I was very sore and could barely sweep the floor,” one member shared, praising co-workers who picked up the slack when she couldn’t help.
Luckily, there are several ways that you can manage HS while at work. Following are some tips for keeping yourself as comfortable and confident as possible and maintaining your well-being and quality of life — both on and off the clock.
No matter what type of job you have — whether it’s in an office or a more physically demanding position — one key to dealing with a skin condition like HS is managing it at home. When HS is under control, it’s less likely to cause problems at work.
First, work with your health care provider to treat your HS. There are many treatment options for HS, including topical and oral antibiotics, biologics, retinoids, oral contraceptives, and more. It may take time to find the treatment for HS that works for you. Once you have it, keep up with it to avoid flares as much as possible.
There are also some practical daily steps you can take to manage your HS. Leave any HS lesions uncovered when you can and when it’s appropriate. This helps the healing process and can reduce pain and inflammation. When you get dressed, wear loose-fitting clothing as much as possible. If your HS cysts or abscesses hurt, you can apply a warm compress to the affected areas to help reduce the pain and draw out the inflammation.
According to Dr. Chris Sayed, a dermatologist at the UNC School of Medicine, “Symptoms of HS can flare unpredictably, which creates major challenges.” To help prepare for flares, he told myHSteam, “it can be helpful to have an emergency kit with bandages and tape on hand when needed.” You can put these supplies in your desk or work locker so you’re ready for wound care no matter what happens.
At a minimum, your kit should contain absorbent pads, tape, a skin barrier for the tape if you are sensitive to it, and petroleum jelly (like Vaseline). You should also know how to properly bandage a newly opened wound. Experts recommend letting it drain as much as possible, then coating it with petroleum jelly. Place the bandage over the top of that, and tape it all the way around. If you’re worried about odor, you can cover the entire wrap with a plastic adhesive skin.
Dr. Sayed also recommends keeping medication on hand to help you deal with pain in case a flare or discomfort strikes at work. “OTC [over-the-counter] options like acetaminophen (Tylenol) and ibuprofen (Advil) up to 800 milligrams every six hours can be used intermittently. Lidocaine ointment (up to 5 percent) is available at most pharmacies or online at sites like Amazon and can be applied every three to four hours to help minimize pain in specific areas. Some patients also find relief from products like Vicks VapoRub applied as needed.”
One member shared that they found a particularly helpful product for on-the-go pain management: “Does anyone use Boil Relief??? I do and I keep it in my purse, office, bed table, bathroom, everywhere!”
Once you know what works for you — for both wound care and managing your inflammatory condition — stock your kit with these items. That way, you’ll always have them readily available so you’ll be prepared when a flare-up occurs.
It’s important to understand and protect the rights you are legally entitled to at work because of your HS diagnosis. This usually involves working with representatives from human resources (HR).
In fact, Dr. Sayed recommends speaking with HR, rather than with immediate supervisors: “Patients should reach out to their human resources liaison for these requests rather than direct supervisors when necessary. Direct supervisors do not have any rights to know protected health information, so there is no need for the information to be shared with anyone other than a human resources contact, who should keep any medical information confidential.”
Many people with HS can qualify for benefits under the Family Medical Leave Act (FMLA) and/or the Americans With Disabilities Act (ADA). If you cannot work at all due to HS and you have no reason to believe that your situation will change, you may qualify for disability benefits, as well.
The Family Medical Leave Act was designed to protect your job while you take time off work to deal with a medical issue for yourself or someone in your immediate family. It offers up to 12 weeks over every 12 months. The leave is unpaid, but your job will be there for you when you can return, and your health benefits will continue throughout your time off.
You don’t have to use all 12 months at once. As Dr. Sayed said, “For patients working at larger companies for more than one year, it can be very helpful to ask for Family Medical Leave Act protection. This legally protects patients from being fired due to medical needs. I typically recommend accommodation for up to five days twice monthly for flares.”
FMLA protection is only available to people who work for companies with at least 50 employees within 75 miles and for those who have been with their employer for at least 12 months. Note that your employer can request that your paid time off (PTO) days count as FMLA days, rather than giving you all of your PTO on top of your FMLA leave.
Employers who are required to offer FMLA protection cannot discourage you from using it and must approve you for it if you are eligible. They also cannot change your hours to influence whether or not you’re eligible, and they cannot use the fact that you take FMLA against you when making continued employment or promotion decisions.
You might be able to get accommodations that will make it easier for you to work with HS under the Americans With Disabilities Act. This could include options like getting a different chair that doesn’t put pressure on your sores, obtaining permission to sit when other employees have to stand, or even getting permission to work from home.
Dr. Sayed recommends asking your employer for any accommodations you may need under this act. “The Americans with Disabilities Act also requires larger companies to provide accommodations such as requiring standing desks, allowing patients to sit when needed, adjustments to uniform requirements, etc., when it won’t significantly impair job performance.”
Before you can get these accommodations, you may need to prove that you have HS and that it qualifies as a disability — in other words, that it affects at least one aspect of your life in significant ways. Health care professionals like your dermatologist or dermatology team may need to submit paperwork to help with this. You should also work with HR to determine which accommodations will help you the most.
Note that only companies with more than 15 employees are required to offer accommodations under the ADA. If your company is smaller than that, you may need to request help in other ways.
If you or a loved one is living with HS, consider joining myHSteam today. Here, more than 29,000 members from around the world come together to ask questions, offer support and advice, and connect with others who understand life with hidradenitis suppurativa. You can share your story, ask and answer questions, join ongoing conversations, and connect with others who understand life with HS.
Have you dealt with HS at work? Do you have strategies for managing HS at work that you’d like to share with others? Share your questions, thoughts, or tips in the comments below or by posting on myHSteam.