Hidradenitis Suppurativa

Welcome to Season 5, Episode 24 of Winning Isn't Easy. In this episode, we'll dive into the complicated topic of "Hidradenitis Suppurativa."

Think hidradenitis suppurativa is just a skin condition? Think again. In today’s episode, disability law expert Nancy L. Cavey takes us deep into the realities of living - and working - with HS, a painful, chronic condition that affects far more than the skin. For many, HS causes relentless flare-ups, infections, and debilitating pain that can make holding down a job nearly impossible. Yet when it comes to filing for disability insurance benefits, claimants often face skepticism, delays, and denials from insurers who don’t understand the full impact of this condition. Whether you’re battling HS yourself or helping someone who is, this episode breaks down what you need to know about how HS affects work capacity, why insurance companies frequently get it wrong, and what you can do to protect your ERISA disability claim. Nancy shares expert insight on medical documentation, treating provider support, and the legal strategies that can make or break your case. Don’t miss this essential conversation about getting the benefits you deserve - even when your condition isn’t always visible. Let’s get started.

In this episode, we'll cover the following topics:

One - What Is Hidradenitis Suppurativa and How Is It Disabling?

Two - Do You Qualify for ERISA Disability Benefits Because of Hidradenitis Suppurativa?

Three - Building a Strong Disability Claim for Hidradenitis Suppurativa

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/


Resources Mentioned in This Episode:

LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mind

LINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals. 

Transcript

Nancy Cavey [00:00:00]:
 Foreign hey, I'm Nancy Cavey, national ERISA and individual disability attorney. Welcome to Winning Isn't Easy. Before we get started, I've got to give you a legal disclaimer. This podcast is not legal advice. The Florida Bar association says I have to say that which I've just done, but nothing will ever prevent me from giving you an easy to understand overview of the disability insurance world, the games the carriers play, and what you need to know to get the disability benefits you deserve. So off we go now. Today we're going to take a deep dive into a condition that many people struggle with in silence. Hydrentis Supertiva, or HS for short.
 
 Nancy Cavey [00:00:53]:
 This is a painful, chronic skin condition and it's more than just a medical diagnosis. For many people, it's a disabling condition that interferes with every aspect of their daily life, including the ability to work. If you're living with HS or you know someone who has hs, this episode is going to walk you through how the condition works, why disability carriers often misunderstand it, and and how to protect your ERISA disability insurance claim if you're going to be filing one and to stay on claim. Now this can help you regardless of whether or not you have hs, because a lot of this is applicable to all types of disability insurance claims. I'm going to talk about number one, what is HS and how is it disabling? Two, how do you qualify for ERISA disability benefits because of hs? And number three, building that strong disability claim for hs. Now let's take a break before we get into this episode and be sure to come back with a pen and a pad because we're going to be covering this in some detail. Got it, See you in a minute.
 
 Speaker B [00:01:59]:
 Have you been robbed of your peace of mind by your disability insurance carrier? You owe it to yourself to get a copy of Robbed of your peace of Mind, which provides you with everything you need to know about the long term disability claims process. Request your free copy of the book@kvlaw.com today.
 
 Nancy Cavey [00:02:20]:
 Welcome back to Winning Isn't Easy. What is HS and how is it disabling? HS is a chronic inflammatory skin disease that affects 1 to 4% of the population. Now, it normally starts after puberty and is more common in women and it tends to affect areas where the skin rubs together, the armpits, the groin, the buttocks, and under the breasts. It begins with painful nodules that may resemble boils or acne and over time these can become abscessed, swollen pus filled lumps, and they develop into deep tunnels under the skin known as sinus tracts. These tracks can rupture, leak and there's foul smelling fluid. And additionally there's scarring. Now, episodes can flare up unexpectedly and they can last for days or even weeks. That may sound very unpleasant, and it is.
 
 Nancy Cavey [00:03:10]:
 But let's talk about why it's disabling. First and foremost is pain. Chronic pain is a hallmark of HS and it can really be extreme pain. It's not just physical pain from the lesions itself. It's the pain of engaging in activity. The pain caused by walking, sitting or moving. When the lesions are in high friction areas. Then there's the unpredictability.
 
 Nancy Cavey [00:03:36]:
 HS comes in cycles, so there are periods of flare ups and remissions. But the timing, severity and duration of the flares are highly individual and unpredictable. So one day you might be functioning fairly well and the next you're unable to walk or wear clothing. Without significant pain and dysfunction. This unpredictability can make it nearly impossible to sustain regular full time employment. Obviously, employers generally require that you show up for work and HS can be very disruptive. Flare ups can lead to frequent absences, late arrivals, or the inability to do just basic job duties, especially in public demanding or public facing roles. But that's not all.
 
 Nancy Cavey [00:04:18]:
 There are secondary complications. People with HS often develop infections, fever, fatigue and other systemic symptoms. In severe cases, these skin tunnels can be. Some become so extensive and so deep that they require surgery and recovery is long. The disease unfortunately can return even after surgery. And lastly, of course, let's not forget the emotional toll. It's associated with high rates of anxiety and depression due to its painful symptoms, its odor, its scarring, its social stigma, and the impact it can have on your self esteem. In fact, people with HS have one of the highest suicide attempt rates among all dermatological conditions.
 
 Nancy Cavey [00:05:01]:
 All of this can combine into a condition that just doesn't affect your skin. It affects your entire life, including your ability to work. So what happens when someone with HS tries to file for disability insurance? That's going to lead us to our next segment of how disability insurance carriers or plans typically respond to these types of claims. And generally what they get wrong. Got it. Let's take a break. Welcome back to Winning Isn't Easy. Do you qualify for your ERISA disability benefits because of Hydra dentitis suprativa, also known as hs? Now, if you purchased a disability insurance policy on your own, called an individual disability policy, or you have your coverage through your employer, I have to tell you that HS might make you eligible for your benefits.
 
 Nancy Cavey [00:06:25]:
 But it can be a tough road to follow in the disability claims process. I want to talk with you about what a disability carrier or a disability plan doesn't understand. They tend to take a one size fits all approach and they fail to recognize the multiple system involvement, the cycles of infections, flares and remissions. And they don't really take into consideration the complications associated with the disease, the pain, and the multifactorial approach to treatment. They just see it as a generic dermatological issue. Now, treatment for HS can include long term use of antibiotics, steroid injections into the sores to reduce the inflammation and swelling, hormonal therapy, biologics like Humira and pain medication. They don't necessarily understand the regimen of the treatment and of course, the cycle of the treatment. And as you might have flares, what I find is that it's not unusual, someone who has HS to get multiple forms of treatment, including both medication and surgery.
 
 Nancy Cavey [00:07:34]:
 Surgery is often recommended to deal with the tunnels, and that can include procedures to uncover the tunnels. It can involve surgery to remove the bumps, it can involve surgery to excise impacted skin. So there's different types of surgery. And the nature and frequency of these surgeries can be unpredictable. What does that mean? Well, that means potential visits to plastic surgeons, colorectal surgeons, and even gastroenterologists. They don't get the systemic involvement of this disease. They just think it's kind of limited to the skin. And in fact, it's not.
 
 Nancy Cavey [00:08:15]:
 They also don't really appreciate the required frequency of skin care and how long it takes on a daily basis to just do basic skin care. They don't necessarily understand the impact of diet on flares. And they think, well, you can control it by just eating certain things. Well, that's not necessarily true. And they certainly, certainly don't appreciate the persistent pain that accompanies hs. And remember, HS impacts different parts of your body. It's normally where body parts rub. So armpits behind your knees, on your buttocks, under your breasts.
 
 Nancy Cavey [00:08:52]:
 And that means that basic movement, basic things like reaching, like sitting, can really cause significant pain. The sores often drain pus with a strong odor. And that obviously can be problematic for lots of reasons, but that involves bandaging and wound care, cleaning. And of course, ultimately you have pain that could interfere with sleep, your clothing choices. And again, as I've said, even minimal physical activity can cause an increase in not only symptoms, but pain. All of these challenges make it really difficult to work, and they don't seem to get that. And again, Unfortunately, I find that clients who have HS have depression and anxiety that can impact a person's functionality. I mean, obviously you don't want to be going out.
 
 Nancy Cavey [00:09:46]:
 You don't necessarily want to be around the public, you don't want to be around co workers. You don't want to be in a situation where you can be subject to stares, questions, comments and rude comments about why you're even in the workplace. I will tell you though, that many times disability carriers or plans will use these legitimate complex issues of depression or anxiety to try to limit the payment of benefits to just two years because of the mental and nervous and policy or plan limitations. As I went through this sort of laundry list of what they don't get, it kind of leads us to some of the common defenses that are raised by disability carriers or plants. What they may say is, oh, there's a lack of objective basis for the diagnosis. Now I think that's a bit stupid because obviously you can see at least the external involvement, but obviously HS can impact your organs and they don't necessarily get that. So they are going to be looking for diagnostic studies or testing that show the involvement of hs. Secondly, they may say, well, there's a lack of objective basis of your restrictions and limitations.
 
 Nancy Cavey [00:11:04]:
 If that's coming along in the denial. What I like to do is to do some videotaping, videotaping of a person's average day so that the disability carrier plan can see what this all looks like and in the right case, even have a functional capacity evaluation, which is a test of your ability to sit, stand, walk, stoop and bend. I want the FCE provider to take photos of your body and have them show what problems you have as you may reach or as you may try to sit. And I want them to try to connect the two and ultimately have those restrictions and limitations endorsed by your physician. I find that this objective proof photos, videos the FCE can be really key if the disability carrier is looking for a reason to deny a claim on the basis of there's no objective basis for the restrictions and limitations. The other defense is the application of subjective medical condition limitations. There are policies and not all policies or plans have this that may have a term that says subjective medical condition limitations. And you'll see a whole laundry list of things from fibromyalgia to pain to fatigue to skin lesions that are quote unquote considered to be subjective based on the language in the policy or plan.
 
 Nancy Cavey [00:12:36]:
 One of the first things you need to do is to get out that policy or plan and Understand, are there any subjective medical conditions and limitations? And if so, how are you going to get around that in terms of objective proof that will address some of these subjective complaints? And one of the favorite defenses, of course, is the mental nervous policy limitation provision that we see. And that is, I think, a significant problem. They come in two flavors. There is the Monty Python one which is caused or contributed, caused and contributed to. Or the other one is the plain one which is just disability is caused by. Now, I think that it is crucial that you understand that policy term because we need to make sure that your doctor is addressing that while you may be depressed or have psychological symptoms, that they are not contributing to your disability, that you are disabled because of the symptoms that you have that are objectively proven. Now, we need to remember that there is no gold standard test for hs, and that can, as I said, be a problem. But one of the ways I think we really get around that is to tell your doctor about all your symptoms, including the frequency and nature of your sores, your skin care routine, and how the pain impacts your ability to function, with a description of problems with standing, walking, sitting, lifting, carrying, stooping, climbing, and I think a daily photo log is really important, together with the video that I discussed.
 
 Nancy Cavey [00:14:12]:
 I think each one of these techniques, if you will, can be used to successfully overcome a claims denial. But there is one big problem that I see in these types of cases, and that is sometimes disability carriers will say, hey, there's a lack of objective basis for restrictions and limitations during periods of remission. They're going to say, in a period of remission you don't have any limitations. And they will evaluate the HSD as a one size fits all. They'll assess the severity of your symptoms, but conveniently ignore or ignore, really focus the opposite on the lack of symptoms during quote, unquote, regular appearances of hs. So they will minimize the intensity, persistence and limitations of your condition when you are not having a flare up. Okay, so if you're not having a flare up, you know it's there, it's not all that disabling. You ought to be able to work, by the way, you had a flare up, but that's just a temporary flare up.
 
 Nancy Cavey [00:15:20]:
 And by the way, once you recover, you should be able to work so you can see why it's really important that you are giving a consistent history of the nature of your symptoms and functionality and that you're keeping a diary and a photo log to document your status. As these episodes become more frequent or intense or unpredictable, it obviously can make it more difficult to work and that diary is going to document the progression. The other thing that we need to recall, as I've said, is the terms of the policy, and I can't emphasize that enough. It is often rare for HS claims to be approved and paid through the full benefit period of time part because of all the things that I've just talked about. And you need to be really cognizant of this flare up argument. You know, if you're not having a flare up, you can work. Okay, yeah, you're having a flare up, but it's temporary and you know you can recover. Please make sure that your medical records are documenting why your condition is not transient or temporary.
 
 Nancy Cavey [00:16:29]:
 Winning your claim does require medical records to clearly document the nature, severity and frequency of your attacks and your ability to function, including your ability to maintain pace and absenteeism. Remember, if your claim is denied, you're only going to have 180 days in which to file an appeal in an ERISA case. And that appeal is the trial of your case. So you don't want to fool around. If your claim has been denied, you need to immediately hire an experienced ERISA HS attorney. Got it? Let's take a break.
 
 Speaker B [00:16:57]:
 Are you a professional with questions about your individual disability policy? You need the Disability Insurance Claim Survival Guide for Professionals. This book gives you a comprehensive understanding of your disability policy with tips and to dos that will assist you in submitting a winning disability application. This is one you don't want to miss for the next 24 hours. Hours we are giving away free copies of the Disability Insurance Claim Survival Guide for Professionals. Order yours today@disabilityclaimsforprofessionals.com.
 
 Nancy Cavey [00:17:54]:
 Welcome back to Winning Isn't Easy Building a strong disability claim for hs. Now, I've covered what HS is, how insurance carriers often mishandle these claims. And I've talked a little bit about strategy, but we're going to talk about that in greater detail. If you have HS and you're thinking about applying for disability insurance benefits either through your filing a claim with your IDI carrier or filing a claim with your ERISA policy or plan, you need to think about what it is you can do to increase the chances of your success. And if you're on claim, you can expect that at some point your claim is going to be denied. So we're going to talk about how we can also increase our chances of maintaining yourself on claim. Step one Get a clear diagnosis and a consistent medical care. There is no gold standard test for hs, but in my View being seen by a competent and qualified dermatologist to get that diagnosis is crucial.
 
 Nancy Cavey [00:19:04]:
 They are going to want to see documentation of the nature, frequency and duration of your skin lesions, how they may change the nature of the treatment that you are getting, because they may question the diagnosis based on the treatment that's being recommended. So you need to make sure that you have regular visits and medical notes that reflect your symptoms and functionality. Remember, I've talked about keeping a diary, both in writing and a photo and video type diary. The other thing that needs to be emphasized is that your doctor has to document how HS affects your ability to function, not just the diagnosis. Are you unable to sit or stand for extended period of time? Do you need breaks? Are you missing sleep due to pain? This is really crucial and a bit goes back to the definition of disability in your policy or plan. You need to understand that what is it? Is it the inability to do one or more of the essential duties of your occupation or is it inability to do the material duties of your occupation? So you need to know, well, what's your occupation as defined by the terms of the policy? You need to understand what those duties are and you need to then think backwards by connecting your symptoms to the problems that you are having with doing those duties. So you have to educate your doctor about the definition of disability and occupation. You have to educate the doctor about specific diagnosis requirements.
 
 Nancy Cavey [00:20:41]:
 We want objective proof. And by the way, doctor, here's some photographic or video evidence. Can we make it part of our record? And if you have systemic complications involving other body systems, then you need to be seeing that specialist. It might be a gastroenterologist. And then their disability carrier plan is going to expect to see objective testing from the gastroenterologist to address the impact of HS on your gastroenterological system. Now, step two, keep a symptom journal. I've talked about that earlier, but I think you need to think about this based on the areas that are affected. You might have, for example, lesions under your arm.
 
 Nancy Cavey [00:21:25]:
 Pictures are obviously great, but you need to talk about the type and severity of pain, particularly as you do various movements, raising your hands up out in front of you to the side, maybe even sleeping where you're putting your body, putting pressure on one armpit, if you're sleeping on one side or the other, and how that impacts your ability to sleep. We also need to be addressing issues with drainage, swelling or, or bleeding. And for that particular affected area, the skin care routine and how long it takes, again, video I think is really crucial. You also Want to document how you may have missed work or other activities due to flares. This journal, I think, is a really crucial piece of evidence. Remember, it's a written journal, photo journal, video journal. It helps counteract that lack of objective proof argument that carriers love to raise, not only in terms of diagnosis, but, but functional restrictions and limitations. Now, step three, again, photo and video evidence.
 
 Nancy Cavey [00:22:27]:
 But I want to take it a step further. You need to take pictures, I think of, of what's going on and then because that sort of sets up a baseline and then pictures of flare ups. If you have surgery, picture before the surgery, after the surgery, the dressing changes, the healing process, how that particular surgery impacts your functionality. Also, we want to date stamp everything. If you're dealing with the draining lesions, we want to take the video. We want to show pictures or video about what's going on here. Ultimately, if this case ever ends up in front of a judge, the judge may be sort of grossed out, but that's the whole point. We want visual evidence that can convince a court that this HS is disabling and meets the terms of disability under the terms of the policy or plan.
 
 Nancy Cavey [00:23:31]:
 The fourth step is coordinate any mental health support. Most of my clients who have HS are depressed, they have anxiety, they even have a bit of post traumatic stress disorder. And that is a particular problem in some policies or plans where there is that mental nervous policy limitation that says if your disability is caused or contributed to, regardless of how small it might be, benefits are limited to just two years. So we want you to get the treatment. We want you to see a mental health provider. We want you to take psychotropic medication if needed. But we don't want the carrier to use your mental health against you. We want the doctor to emphasize your mental health, doctors to emphasize how HS is the underlying cause of your emotional distress, not the other way around.
 
 Nancy Cavey [00:24:23]:
 And that while it may cause some emotional distress, it is not disabling. We want to parse that at step five. Obviously, you don't want to go it alone in a case like this. ERISA claims are complicated. And once your claim is denied, what you have to do is file an appeal within 180 days. And I would prefer to build the evidence before litigation, obviously a claims denial. But if we're in a claims denial situation, I would be asking you, like any HS lawyer would be, to do the kinds of things that we just talked about. In my view, you should not wait until after denial to get help.
 
 Nancy Cavey [00:25:04]:
 If you've got hs, you've heard all the challenges that I've talked about, and I think it's really important that you're working with an experienced disability attorney who can help develop the medical evidence, make sure that the history is clear and accurate, make sure that the diary, the photographic and video evidence is consistent and as appropriate, have your doctors address the objective basis of the restrictions and limitations and diagnosis, have them address why any mental health issues are not the cause of your disability, and then to be prepared to address any potential subjective medical condition limitation terms in your policy. I like to try to plan that ahead, knowing that most likely at the end of two years the disability carrier is going to say, well, you know, you may not be able to do your own occupation, but you could do some own occupation at home, you know, remotely. Or by the way, your benefits are limited to just two years because of a subjective medical condition limitation. Or by the way, your benefits are limited in just two years because of a mental nervous policy limitation. We know those things are coming, so we want to plan accordingly. So even a consultation can help you clarify your options and avoid common fitball pitfalls. HS is painful, it's persistent, it's disabling. And I find that insurance companies or plans just don't take it seriously.
 
 Nancy Cavey [00:26:27]:
 They look at it as a basic, quote, unquote everyday dermatological type claim. Now, if you are fighting for your disability benefits or living with hs, I hope that today's episode has shed some light on the process and empowered you to take the next step. Documentation, consistency Having the right medical and legal team can make all the difference. Got it. Thank you for tuning in to today's episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like it, Leave a review, share it with your family or friends, and subscribe to this podcast. Join us next week for another insightful episode of Winning Isn't Easy. Thanks for listening, Sam.