Living With Hidradenitis Suppurativa

Coping with a chronic skin condition like hidradenitis suppurativa (HS) takes resolve and being mindful of both your physical and emotional needs. But even with the ups and downs that come with HS, there are steps you can take to minimize symptoms, deal with the emotional aspects having a chronic skin condition can bring, and improve your quality of life.

Emotional

While hidradenitis suppurativa isn't an incredibly rare condition, with up to 4% of the global population having the condition, people who have it often feel alone.

People with hidradenitis suppurativa can experience anxiety, depression, shame, and embarrassment. There's a feeling of needing to hide breakouts and scars, and embarrassment of the odor that drainage from lesions can cause.

Because it often appears during puberty and young adulthood, just as self-image is developing, hidradenitis suppurativa can have a great and lasting impact on someone's self-image and self-esteem.

Studies have found that those with hidradenitis suppurativa often have a poor body image, and feel insecure in their bodies. Underneath all of this is also a fear of being stigmatized.

Other common feelings are anger and frustration—at the treatments that aren't working, at your body that seems to have turned against you, or at your healthcare provider who isn't "helping" your skin improve.

Rest easy in the knowledge that all of these feelings are normal. Having a chronic health condition is frustrating, anxiety-producing, and sometimes demoralizing.

There is good news, though. Positive coping strategies help improve feelings of well-being and also improve quality of life.

For example, try changing your perspective to focus on positive rather than negative. Instead of hiding your condition, be honest with those in your life about having hidradenitis suppurativa and how it affects you.

In addition, a study published in JAMA Dermatology found that people who were more resilient in the face of hidradenitis suppurativa had less depression and a higher quality of life. Resilience isn't an inborn trait—you can learn to become more resilient by being aware of your feelings and making conscious decisions to focus on factors you can control.

If you are having difficulties with anxiety, depression, or other emotions that are negatively impacting your life, that you can't seem to get past, let your healthcare provider know.

Physical

The pain of hidradenitis suppurativa can be intense. Besides using over-the-counter pain relievers such as Advil (ibuprofen) or topical analgesics as needed, there are steps you can take to help ease pain:

• Warm baths or compresses: These can relieve pain and may help nodules to drain. Heating pads are a good choice when your healthcare provider suggests keeping the area dry.
• Wear loose-fitting, breathable clothing: This helps prevent painful rubbing in the area which can further inflame affected follicles.
• Soft, stretchy undergarments: When choosing your underwear, go with soft cotton fabric that breathes. Pay special attention to the trim around the leg openings and ensure it is soft, stretchy, and smooth (rather than a tight, or lacy, finish). You may want to go up one size to prevent rubbing.

Try Stress-Relieving Activities

Stress can trigger a hidradenitis suppurativa flare for some people. Even if stress doesn't contribute to a worsening of your HS, stress reduction makes it easier for you to cope with the emotional and physical impact that hidradenitis suppurativa has.

Ideas include:

• Yoga
• Meditation
• Tai chi
• Gardening
• Walking

Try to add into your day some activity that is enjoyable to you.

Hair Removal

Shaving can irritate the skin, especially when you're in the midst of a breakout. Refrain from shaving during a flare. If you absolutely must remove hair, ask your healthcare provider for recommendations.

There is some indication that laser hair removal helps improve hidradenitis suppurativa in the armpit and groin area.

Social

Hidradenitis suppurativa can affect your social life in a few different ways. In the midst of a flare it can be so uncomfortable to move that you simply don't feel up to going out with family and friends. Embarrassment from drainage and odor may also prompt you to isolate yourself.

But having social connections is so important to your well-being. If you physically can't participate in certain activities, plan other things that you can participate in. Don't be shy in letting friends and family know when you're physically having a hard time so they can accommodate you.

If pain is consistently keeping you from carrying with daily activities, it's a good time to talk with your healthcare provider. Your HS treatment plan may need to be revisited.

Sexual Health and Relationships

Hidradenitis suppurativa can have a significant impact on your sexual relationships. Having sex can be physically painful when the nodules occur in the groin or buttock area.

Odor, drainage, and feeling that the lesions or scars are unsightly also make many people uncomfortable being intimate with a partner.

The severity of the symptoms don't seem to directly correlate with the level of sexual disfunction. In other words, some people with mild symptoms may be extremely distressed and their sex life incredibly affected, while others with severe symptoms report their sex life isn't markedly diminished.

Women with hidradenitis suppurativa are more likely to report the condition has a negative impact on their sex life than are men.

The most helpful thing you can do is be honest with your partner about how you're feeling, both physically and emotionally. If sex is painful because of a HS flareup, talk to your partner about other ways to maintain a sexual connection that you are physically able to do.

Finding Support

Having social support directly impacts how you feel and your overall quality of life. Talk to understanding friends and family about how you are feeling.

It's also helpful to talk with other people with hidradenitis suppurativa. Just feeling that you're not alone can do worlds of good for your psyche.

Start by asking your healthcare provider if there are any hidradenitis suppurativa or chronic skin condition support groups that meet near you.

Hope for HS is an advocacy and awareness group that provides support for people with hidradenitis suppurativa. They offer in-person support groups in select areas of the U.S. plus online support via the Hope for HS Facebook page. They also offer a private Facebook group that those with HS can join.

Practical

Hidradenitis suppurativa can have a direct impact on daily activities. When you're in the midst of a flare, try to rest as much as possible.

Other tips:

• Choose clothing that is loose-fitting and easy for you to get in and out of, especially when a flareup is hindering your ability to move.
• Ask a loved one for help with activities you're having difficulties accomplishing when you're in the midst of a flare.
• Carry absorbent bandages and cleansing wipes with you, to help with odor control when a lesion is draining.

Work

Working during a flare can be difficult. A study, published in the International Journal of Dermatology, found that hidradenitis suppurativa had a significant impact on absenteeism and productivity, with over 20% of people reporting staying home from work because of hidradenitis suppurativa, and over 60% saying they were not as productive at work because of the condition.

Look into your company's policies on remote work or reduced hours. Also, become familiar with disability plans in the chance you need to take prolonged time off of work.

If you feel like your company will be receptive, you may choose to discuss your condition with your boss or with HR. Remember, though, that it is up to you how much you disclose about your condition.