What You Wish You’d Known About HS When You Were First Diagnosed | myHSteam

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What You Wish You’d Known About HS When You Were First Diagnosed

Medically reviewed by Zeba Faroqui, M.D.
Posted on July 18, 2023

Getting diagnosed with hidradenitis suppurativa (HS) can seem overwhelming. Since HS has no cure and requires ongoing management, you may worry about the disease’s impact on your future.

People diagnosed with HS face concerns such as explaining their condition to loved ones and informing people that it’s not contagious. The thought of living with chronic pain can bring on mental health symptoms of anxiety or depression. It can help to know that others can relate to what you’re going through.

On myHSteam, thousands of people with HS discuss the ups and downs of living with this chronic inflammatory skin condition. Hearing about their symptoms, treatments, and coping skills can give you new hope and insight. “I feel much better knowing that I’m not alone and I have all the support from the group,” one member said.

Read on for more words of wisdom from people with HS, who share their experience with caring for skin affected by HS, as well as navigating the social and emotional aspects of the disease.

Managing Symptoms

Your health care provider is the best source of information for HS treatment options, but it’s important to seek out a doctor who has experience with HS and is willing to listen and help you find solutions if your current treatments aren’t helping. Interestingly, it’s not always a dermatology professional who first recognizes HS.

“Actually, I was diagnosed by my OB/GYN, and my diagnosis was then confirmed and treated by my dermatologist,” one member said. “I was 38 or 39 when I finally got a diagnosis. The pregnancy hormones made my skin go wild. Over the years, we have found my flare-ups were cyclical with my menstrual cycle. Other flares were caused by being out in the summer during hot and humid days.”

Another member responded, “I was never told mine was hormonal, but that makes sense. I had a hysterectomy a year ago, and my flare-ups have been happening so much less.”

Establishing an ongoing relationship with trustworthy health care professionals can make all the difference. “I’ve noticed that, when going to urgent care or the emergency room for HS, they make it seem like everything else is way more important. They brush off the seriousness of the pain, discomfort, and depression HS causes for many people. It makes people seem like they’re less important,” said one member who was frustrated and disappointed by their experience in the emergency room.

In addition to your health care team, other people who are living with HS can give you ideas on how to stay healthy and deal with everyday challenges.

“I’ve had HS since I was 18 years old, after the birth of my daughter. But the breakouts were small and mild,” explained a myHSteam member. “Over the years, I’ve noticed that if someone has the flu, they give the virus to me. I don’t get sick like them; I’ll maybe get a runny nose, mild cough, and swollen lymph nodes … then sometimes I’ll eat spinach or anything with iron, and in a day or two, the bump will slowly go away or heal faster.”

As you explore different HS treatment options, learning ways to care for your health and well-being can help you feel better along your journey.

Finding Your Triggers

A higher risk of HS is known to be related to certain lifestyle factors and conditions, including smoking, obesity, and metabolic syndrome (a combination of medical conditions, such as diabetes, high blood pressure, high cholesterol, and obesity, that increase your risk of heart disease). However, many people with HS feel stigmatized by others — including health care professionals — because, even though they’ve made healthy changes, their condition doesn’t always improve.

There’s no known cause of HS, but after living with the skin disease for a while, you may notice that certain foods or environments worsen HS lesions. “My flares are caused by stress, dairy products, and high blood sugar,” shared a myHSteam member. You may not have the same triggers as someone else, but hearing about theirs can help you think more about what’s worsening your symptoms.

Members of myHSteam have expressed frustration about the lack of information on HS causes. “One thing I wish I knew when I first got diagnosed was what was going with my body and what’s causing it,” said one member, adding, “and not getting any kind of answers.”

Studies have shown that HS is an inflammatory skin condition, and using anti-inflammatory medications and treatments can improve quality of life with HS. More research is needed, but there’s hope on the horizon as scientists continue developing different ways to target inflammation at the immune system level, which is the underlying cause of several health conditions, such as psoriasis and Crohn’s disease.

Discussing Your Condition

If HS is new to you, you may still be learning about what the skin disease entails. Often, people aren’t aware of hidradenitis suppurativa until it affects a friend or family member. Many myHSteam members said that they wish that, when they were first diagnosed, they had known that the condition isn’t contagious and nothing they did caused it.

Unfortunately, sometimes the people closest to you don’t understand the difficulties of HS and aren’t as helpful as you’d hope. One member wrote, “I’ve spent my entire life taking care of everyone and running a household. Now I need help and someone to take a little care of me.”

If you don’t feel like you’re getting the support you need from the people in your life, it’s important to reach out further. One member said, “HS is not being talked about enough. I bet more people have it and think they are alone.”

Another agreed, “You’re right. Most people feel ashamed, and when you go from doctor to doctor and they don’t know what’s going on, people with HS seclude themselves from others and fall into depression. Maybe if there were more advertising on television, it would motivate doctors to learn about what’s going on and encourage those with HS to come forward about their condition.”

Finding an in-person or online support group, as well as educating people who are willing to listen as you describe your experience with HS, can help you feel heard and accepted. One member uses articles on myHSteam to share information about the condition with loved ones: “I have appreciated being able to have all this information ready, so my fiance and I can read and discuss it.”

In addition to getting treatment for your skin, don’t be afraid to seek professional mental help to cope with the pain and stigma of HS. It’s not unusual to face mental health hurdles after an HS diagnosis — in fact, it’s very common. You might consider involving your family or partner in group therapy sessions to improve communication and build more positive relationship dynamics.

Talk With Others Who Understand

On myHSteam, the social network for people and their loved ones living with hidradenitis suppurativa, more than 34,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

Is there anything you wish you had known sooner about the symptoms of HS? What self-care practices and treatment plans have you tried? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on July 18, 2023
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Zeba Faroqui, M.D. earned her medical degree from the SUNY Downstate College of Medicine. Learn more about her here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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