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Hidradenitis Suppurativa: Coping with Frustration and Distrust

Getting an accurate diagnosis of HS can be a long and frustrating process, but it’s important not to give up.

Medically reviewed in December 2020

Many people with hidradenitis suppurativa (HS) live with symptoms for years before a healthcare provider accurately diagnoses the condition. Hidradenitis suppurativa is a condition that causes firm nodules and abscesses in the underarms, groin, buttocks, and other areas of the body where skin rubs against skin. It is often painful, it can lead to severe scarring and permanent damage to the skin, and it is emotionally and psychologically distressing to live with.

If you lived with HS for years before getting an accurate diagnosis, it is normal to feel frustrated and possibly distrustful of healthcare providers.

Below are some strategies that might help you cope with these feelings and get the care you need for this chronic skin condition.

Don’t give up
HS is a chronic condition, meaning that people who have HS typically have the condition for life. While symptoms can go away for periods of time, symptoms relapse and can become worse with time.

If you have already seen numerous healthcare providers who were unable to give you an accurate diagnosis, it is normal to feel skeptical or distrustful of healthcare providers. Do not let this prevent you from getting treatment. Find a dermatologist who understands HS and how to treat HS.

Getting treatment as early as possible can help prevent further damage to the skin. And if it has taken years to get a diagnosis, you do not want to delay any further.

Treat the unseen symptoms
HS is known to have a significant mental and emotional impact. Disorders like depression and anxiety are more prevalent among people who have HS. People with HS often report feelings of shame, embarrassment, low self-esteem, low self-worth, and other negative emotions. Like the physical symptoms of HS, these invisible symptoms will not go away on their own.

Learn as much as you can
While it is important to work with a knowledgeable dermatologist, it is also important to be a knowledgeable patient. Learn as much as you can about HS, especially treatment options and what you can do to manage the condition. Knowing more will put you in a better position to make treatment decisions.

Connect with others
No one knows the frustration and struggle of living with HS except for other people who are also living with HS. Consider joining a support group for people with HS. There are a number of support groups that can be found online. Some places to look include patient advocacy groups, including:

  • Hope for HS. This nonprofit group hosts an online support group as well as several groups that meet in person in the U.S.
  • No BS About HS. Their site includes links to several Facebook groups for people with HS.

Support groups provide a safe environment where people with HS can openly discuss their challenges, concerns, and questions.

Sources:
MedlinePlus. "Hidradenitis suppurativa."
Georgios Kokolakis, Kerstin Wolk, et al. "Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System." Dermatology (Basel, Switzerland), 2020. Vol. 236, No. 5.
DermNet NZ. "Hidradenitis suppurativa."
Cleveland Clinic. "Hidradenitis Suppurativa."
University of Rochester Medical Center. "Hidradenitis Suppurativa."
American Academy of Dermatology Association. "Hidradenitis suppurativa: Diagnosis and Treatment."
UpToDate. "Hidradenitis suppurativa: Management."
Dimitra Koumaki, Ourania Efthymiou, Evangelia Bozi, and Alexander C Katoulis. "Perspectives On Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa." Clinical, Cosmetic and Investigational Dermatology, 2019. Vol. 12.
Laura Huilaja, Hannu Tiri, et al. "Patients with Hidradenitis Suppurativa Have a High Psychiatric Disease Burden: A Finnish Nationwide Registry Study." Journal of Investigative Dermatology, 2018. Vol. 138.

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