Hidradenitis suppurativa (HS) Learning Zone
Transcript: Supporting patients
Dr Steve Daveluy and Cindy Stillman
Interview recorded Sep 2024. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- I think that people don't understand all the ramifications of having these painful boils, often in very intimate locations. So you look at a person and you think like, "Oh, they look normal," but when you have gaping wounds and you smell a little funny sometimes, or you have bandages that you're worried are gonna come off, or scars that are often in your armpits, places that people do see, it is, I think, a red flag for providers to watch for these mental health symptoms because it is a painful, debilitating disease that really does affect people on different levels. I think too, because of the length of time it takes to get a diagnosis, the longer you're just suffering with the pain. It really does lead to depression. There's lots of times that you can't do the things that you want to do. I mean, you wanna go swimming, well, you can't go swimming if you have bandages in your groin. It's unfortunate. I think too people have to miss work for doctor's appointments, and also just because of the chronic pain and all of that from a mental health perspective, really just has this big impact that is hard to describe and important to remember as a provider when you're treating people with HS. I also think Dr. Daveluy, I know you and I share this trait, but we are both optimists. So to be able to channel that little bit of optimism when you have said over and over, "I'm not okay, this is really painful, this is really hard" to many people over multiple years, it does eventually lead to some mental fatigue. - Yeah, yeah, and that's such a great point, that hope and optimism can be really powerful, but sometimes it's really hard to see it and to have it when you're in the thick of it and it's a flare and you're in horrible pain, and like you said, missing things.
One of my patients the other day was sharing stories where she hadn't disclosed to her friends that she had HS, and then when she did, she said they sat around and talked about all these things that made sense. They go, "That's why you would never go swimming when we would go to the beach or go to the pool. And that's why sometimes you would miss this or you would miss that." And she goes, "Yup, that's when I had a flareup. That's it." She said it felt kind of cathartic and good to be honest with them about what was really going on, whereas before she wasn't comfortable and it led to a lot more isolation, like you mentioned. It's funny you brought up the pain when you were giving your response too, and we know that pain is the number-one symptom in HS. It's the number-one reason that people seek healthcare is because of the pain, and it can be so excruciating. And what's really challenging is sometimes you have a small lesion that's really painful or maybe a big one. The pain just doesn't seem to be predictable. And I think pain is a huge factor in HS and it really does sort of influence our patient outcomes a lot.
I think that's the main thing patients are looking for is relief of the pain. And in all of our guidelines for treatment, it says, well, the best way to treat the pain is to get the disease under control, and we're always trying to do that, but sometimes that's a struggle, right? - Yes, yes. - But I always make a point to make sure I say that to patients that when we get your disease under control, when we get treatments that work, the pain is going to get better, but if it's not enough, we can still address the pain by itself, which luckily, we're learning more and more about how to treat the pain and the different types of. And then I think it's really important to just talk about the pain. We know studies have shown that patients feel much more validated if their provider asks them about their pain versus if we don't ask, then it's sort of this uncomfortable, well, I guess they don't really wanna know and maybe I shouldn't bring it up, whereas, like I said, it's very validating when someone's asking about your pain, and I think sometimes clinicians are a little bit nervous because if you ask about pain, you have to treat it, but I think we should be treating it, and I think there's safe and effective ways to do it. And sometimes it takes a team. We know a lot of HS care is multi-specialty and you might need a team, and so you may need a pain specialist as part of the team, or the pain might be closely tied to the mental health piece, so even a mental health professional, helping to provide that aspect of care for a patient can help with the pain as well.
This content has been developed independently by Medthority who previously received educational funding from Novartis Pharma AG in order to help provide its healthcare professional members with access to the highest quality medical and scientific information, education and associated relevant content.