Hidradenitis Suppurativa and Healthcare Provider Relationships
We recently conducted the 2021 Hidradenitis Suppurativa (HS) In America Survey. A total of 438 people with HS completed the survey. One thing we wanted to understand was how they relate to their healthcare team, so we asked participants the following questions.
"When you're looking for a healthcare provider to treat your HS, what are the 3 most important factors that you look for?"
"What is the one thing you wish your healthcare team knew about the pain you experience?"
Several themes came up again and again in the community's responses.
Respondents shared a desire for a doctor with compassion. Living with HS is challenging and painful. A doctor who cares and looks for options to alleviate symptoms is important to the well-being of those with HS.
"A doctor that will listen.""Patient and caring, desire to help.""Wants to learn about me and do everything possible to help me.""Not canceling out my feelings and making me feel invalid."
Knowledge of HS
HS was once considered a rare disease, so many doctors are unfamiliar with the condition. Finding a doctor with knowledge and experience in treating HS is a priority for many people living with the condition.
"Prior, thorough knowledge of HS.""Someone who handles HS on a regular basis.""Specialist in HS.""Won't assume it's an STI."
Multiple treatment options
Respondents said they wanted doctors to consider multiple treatments for their HS. Lesions and inflammation do not always respond to antibiotics. Tylenol and ibuprofen may not manage the pain. Those with HS need alternatives and creative treatment approaches.
"Willingness to surgically remove some lesions.""Someone who has a holistic approach to treatment.""Willingness to prescribe pain killers for flare-ups.""One that advocates for diet modification.""A doctor that doesn't just push antibiotics and hope it works.""Willing to try unconventional treatments."
Looking beyond the scale
A common response was needing doctors to look beyond body shape and size. The scale does not tell the whole story. HS symptoms do not vanish with weight loss, and the pain is real. Those with HS should not need to lose weight to prove the legitimacy of symptoms.
"Not someone that will just tell me to lose weight.""Don't ring up that it's all because I'm fat.""No fat-shaming!! My weight is NOT the problem.""Health at every size."
Some factors of choosing a doctor for HS treatment are more practical. Location, insurance plans, and gender of the doctor influence choices. Survey respondents want easy access to a doctor when needed. The ability to schedule quickly during a flare is essential.
"Distance from home.""Accepts my insurance.""Availability of appointments.""I look for a female dermatologist – male doctors tend to dismiss my HS symptoms.""A person of color.""LGBT+ friendly.""Mention of HS on their website."
Understanding the pain of HS
Helping doctors understand the impact of pain with HS is challenging. Survey responses highlighted how much pain affects daily life with HS. Daily pain affects quality of life. Doctors need to address pain management in HS treatment.
"The pain is the primary difficult aspect of HS, and it should be a vital part of HS treatment.""The pain is significantly more severe than it may look based on symptoms at the surface since the flares involve inflammation that goes much deeper than what is immediately observable. Pain management NEEDS to be part of HS care.""The quality of my life is poor.""Sitting hurts, walking hurts and reopens wounds; when it does pop, it bleeds and oozes for a day and goes through clothes."
Grasping the emotional impact of HS
Alongside physical pain, survey participants shared about the emotional burden of HS. The symptoms of HS can be embarrassing. Depression and anxiety are common. Doctors need to understand this and help address the emotional toll of living with HS.
"I wish they understood how hard it is to be patient waiting for treatment to work.""How long I have lived with this pain and embarrassment.""That it deeply impacts my depression and self-worth.""How embarrassing the boils, scars, and unexpected bursts can be.""It's all very embarrassing and takes an immense psychological toll that affects your self-esteem and sexuality."The 2021 Hidradenitis Suppurativa In America Survey was conducted online from June 2021 through August 2021. The survey was completed by 438 people.
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