Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected by hidradenitis suppurativa (HS), spoke on misconceptions she’s encountered on her HS disease journey and the importance for physicians to be conscientious of their advice to patients.
Verbal communication in consultations by dermatologists and physicians has an extensive impact on patient engagement in the management of hidradenitis suppurativa (HS), said Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected by the disease.
Can you speak on misconceptions and other care management challenges regarding HS?
I think the only thing is just to reiterate that it's not your fault. I think in so many cases, we go to the doctor as a patient and you're told: Oh, you need to lose weight; oh, you need to make sure that you're washing appropriately. These are all things that we already are fully aware of, and in a lot of cases it's said with such a negative connotation.
I, for instance, when I was 16 and diagnosed, was told that I had a Black woman's disease. So, you take a 16-year-old Caucasian female who already is super uncomfortable in her own skin, and then tell me that I don't even fit in my own disease demographic. That one statement has stuck with me my entire life. I don't think that the physician had any idea the impact that one statement had. It led me to not seek treatment for my HS, because I was concerned that when I would go to the dermatologist, that people would think that I was out of place: “What's wrong with her? She's a Caucasian female at 16—why does she have a Black woman's disease?” What does that even mean? How is that helpful?
Physicians need to be really conscientious of what they say to their patients. They have no idea the impact that one statement can make on someone, their treatment journey, their ability or desire to seek treatment, because we are already feeling out of place. And I think that is a crucial thing that we need to get through to dermatologists and anybody dealing with patients with HS, about being very conscientious about what they say to them and the impact that has on them.