A CARETAKER’S GUIDE:
5 Essential Tips for Living with Severe Hidradenitis Suppurativa
How to navigate this incurable nightmare
As I write this, my husband, Jeremy, is lying beside me in a very specific way to avoid the agony of a seemingly simple movement, like reaching for his phone, flipping the light switch…ANYTHING that requires movement. Regularly, he’ll grunt and wince in pain as I offer anything possible to make him feel better. Ice pack? Compress? Pillow? Head-rubs?
You see, Jeremy has the worst stage — Hurley Stage III — of an incurable auto-immune disease called Hidradenitis Suppurativa (“HS” for short) and is in the midst of a dreaded flare. A major, unbelievably painful flare…in both armpits, waist, groin, tailbone, and both butt cheeks. It’s heartbreaking to witness and even more so be afflicted with.
We write this article amidst a painful flare to share:
- A no-bullshit description of HS.
- Our HS journey.
- Five essential tips we’ve learned living with Stage III HS
- Free resources we’ve gathered along the way, in hopes to provide anyone in a similar situation hope, relief, and some semblance of comfort.
Please remember and join us in repeating our mantra…THIS. IS. TEMPORARY.
Important Disclaimers:
- I am not a medical professional. The words written here are based on my personal experience and are not intended to represent professional medical advice. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding any medical condition, including Hidradenitis Suppurativa. Never (ever!) disregard professional medical advice or delay in seeking it because of something you have read on this (or any!) website.
- We recommend/provide links for products that have worked for us. Should you decide to purchase one of these items (at no cost to you), as an Amazon Associate, we earn from qualifying purchases.
What is Hidradenitis Suppurativa (HS)
Hidradenitis Suppurativa (hi-drad-uh-NIE-tis sup-oar-ruh-TEE-vuh) is a tongue twister — most refer to as HS. After six years, I still have a hard time pronouncing.
Although I encourage you to read the full description below if you want a short answer — here’s mine: HS is a non-contagious frickin’ nightmare of puss-filled bumps ranging in size and pain severity as the puss builds inside your skin and can completely debilitate movement until it finally bursts, often oozing constantly, and sometimes, forever.
HS affects up to 4% of the world’s 7.7B population — that’s over 300,000 people suffering with HS. Although linked to genetics, the exact cause is unknown.
Want more?
HS is a painful, incurable, chronic inflammatory disease — not contagious/transferrable to others — that affects your hair follicles and sweat glands, causing painful bumps of various sizes to form (typically) in hidden, high-friction areas, including buttocks (check!), groin (check!), private parts (check!), armpits (check!), waistline (check!), under breasts — then burst and ooze horrid smelling puss and blood, sometimes constantly.
We’ve also learned of heartbreaking yet inspirational stories of HS outbreaks on the head, face, and neck, like Jackson Gillies shares in his TED talk.
After the bumps explode and stop oozing (which sometimes, they don’t), these craters leave behind scar tissue which — depending on what Stage you are in (see below) — forms into interconnected “tunnels” (think of this similar to ant farm tunnels) under the skin connecting the abscesses and filling with puss. These interconnected abscesses can become massive (Jeremy’s had some the size of a baseball), can take what seems like forever to “pop”, and render you useless because you are in such agonizing pain.
Here is a collection of pictures, including the stages of HS. Trigger warning: these pictures are cringeworthy.
On a personal note, Jeremy’s current armpit flares first started in his left armpit and took a week to pop, just in time for the right armpit to get that “oh so familiar tingle” which warns you a flare is imminent. Oh yeah, and his poor bottom (buttocks) has a golf ball size flare which prevents him from sitting and throbs all day.
By now I’m confident you get the idea.
Levels of HS severity are described using “Hurley Stages” from I (1 = beginner) to III (3 = most severe). Jeremy is Stage III. Here’s more on WebMD if you are interested.
Potential “triggers” of an HS flare include smoking, certain foods (see Tip 2 below), obesity (although thin people also have), stress, heat, tight clothes, and razors (irritates hair follicle).
Treatment: depending on severity, treatments can range from simple diet changes to radical surgery. There are a variety of topical products and supplements that work for some — the trick is finding what works for your body…and it is a journey. For reference, we are at a point of reconsidering surgery for Jeremy despite reading so many cases of HS recurrence after surgery. We are desperate for SOMETHING to provide relief.
This disease has been heartbreaking to witness. Even more heartbreaking to research and learn about so many living with this disease, many of who have no idea what is happening or have no hope of a cure anytime soon.
Our HS Journey
So how did we get here?
Blasting you with 6 years of chronology in prose seemed cruel. Here is Jeremy’s HS journey in an easier-to-digest format.
We’ve gained a lifetime’s worth of knowledge about what DOESN’T work for Jeremy, but also what DOES. Here’s the shortlist:
5 Essential Tips to Living with Severe HS
- Get professionally diagnosed, ASAP.
- We are guilty as the rest of the world in attempting self-diagnosis. Surely that sore throat means I have throat cancer according to WebMD, right? Wrong. GO. TO. THE. DOCTOR!!!
Don’t assume every bump is HS.
- Don’t try and be your own doctor. Make the damn appointment, ASAP! Seriously, call now. Set a reminder. Go, now! The faster you get properly diagnosed, the faster you can begin a treatment plan that could make all the difference in your quality of life. Early diagnosis is key.
- Dermatologists and Rheumatologists are typically the primary types of Doctors who treat HS. And of course, your Primary Care Physician should be kept apprised of your condition (often times this doctor will first identify HS and refer you to the Dermatologist or Rheumatologist).
2. Start the Auto-Immune Paleo (AIP) Diet to find food “triggers”.
- For some, diet changes have been the savior in healing (putting into remission) their HS. We haven’t been that lucky (yet), however, we definitely agree there is a linkage between food and flares and have found what foods “trigger” (cause) Jeremy’s flares.
- For us, there are two types of triggers: 1) acute (immediate reaction) and 2) cumulative (develops with regular use). Our acute triggers: sugar, coconut, oil / fried foods, alcohol, beer. Cumulative triggers: dairy, grains.
- Our first recommendation is to start with the Auto-Immune Paleo Elimination Diet to remove ALL inflammation-causing foods. We immediately bought this cookbook (easy to remember — “The Autoimmune Paleo Cookbook”!!!) which was so incredibly helpful to walk through the phases of complete elimination to the reintroduction of one food at a time.
- We won’t lie, this “diet” (new lifestyle of eating) can really suck sometimes. It can feel like you can’t have ANYTHING we had previously looked forward to — coffee, sugar, dairy, blah blah blah. Enough whining. Here’s the bottom line. NOTHING tastes as good as being healthy / flare-free FEELS. Nothing. This “AIP Comfort Foods” cookbook was a lifesaver when we needed some good ‘ole comfort food that wouldn’t cause a flare.
Remember:
Change your perspective and figure out creative ways to eat what you CAN have. It takes a little time, but thank goodness there is this amazing thing called the internet that has a wealth of recipes and different diet plans for you to try (hail, Pinterest!).
3. Have a support network.
- Online, family, friends. Find your tribe. They are there. Don’t let your own assumptions on what people will think to detract you from telling them. Seriously — you are loved and people want to help and support you. If you are still too afraid to tell a loved one, start with a Facebook group — there are lots, here is one we regularly use.
- Don’t do this alone — take comfort in the fact that you ARE NOT alone, others are going through this directly, or indirectly (like me, the wife).
On that note, if you are a caretaker or loved one of someone suffering from HS, part of how you can help is to get educated on the disease. Consider joining a support group for caretakers as HS.
To get you started, here is a library of resources on the “No BS about HS” website, including HS communities.
4. Find the products that work for you.
- Preface: Every human has an authentic genetic disposition. What works for me may not work for you.
- We have tried everything — from cheap to expensive items. Many of which are tucked in drawers and cabinets, “just in case” they may work in the future (and because, DAMMIT, these products can be pricey!).
Here are the products that work for Jeremy and we have on hand AT ALL TIMES:
5. Traveling abroad — learn from our mistakes.
- Bottom line up front: before you travel, have a solid plan on where you are getting your medication and when.
Never assume you can easily obtain medication abroad. Never stop medication.
- Guilty, guilty, guilty…we learned the hard way in the form of Jeremy being immobile for over 7 months and counting. We are dearly paying for these mistakes as I write this article.
- Our YouTube video (below) documents the journey to help ensure others don’t take the same risks. If videos aren’t your thing…read on below.
Here is what happened.
We started our new life of full-time travel in July 2020 and were armed with one month’s supply of Humira, the medicine that has kept Jeremy’s HS relatively stable. Our first stop was Mexico for 2.5 months, followed by Brazil for 3 months.
You see, prior to departing, our research showed we could get Humira in Mexico and Brazil. Great, let’s go and figure it out there.
WRONG. SO WRONG!!!
An expensive medicine like Humira is extremely hard to come by and usually requires you first visit a local doctor and begin the process of getting paperwork (and in the case of Brazil, government approval) to enable you — the foreigner — to receive this specialty drug.
The Humira ran out halfway through our Mexico trip. Jeremy was feeling good, he didn’t have any major flares and decided we’d resume our hunt for Humira when we arrived in Brazil a month later.
We were happily surprised that Jeremy was pretty functional not taking Humira. We didn’t realize the residual effects of Humira were still protecting him. We also didn’t realize how much worse his HS has progressed. Until WHAM.
After two months off of Humira, Jeremy was in agonizing pain. He was on the couch or bed for a month. Exhibit A:
We waited too long to visit a Brazilian dermatologist, who gave us the standard round of antibiotics and topical treatments and looked into getting Humira. With only two weeks left in Brazil, we couldn’t get Humira by the time we departed.
As it turns out, the Brazilian government doesn’t jump through hoops to get foreigners heavily regulated, and very expensive drugs like Humira.
The 25-hour journey home was intense. Thankfully, wheelchair assistance through three airports, airport lounge access, and incredibly kind airline staff — who gave Jeremy a whole row of seats to lay sideways (his bottom was the major culprit at the time) — made the trip more bearable.
Please don’t make the same mistakes we did. Have enough medicine to cover your trip duration, or have a very solid plan in place on where to get your medication in advance. Don’t assume or hope, make that plan.
One more tip about international travel.
Most countries have drug stores where you can get your supplies — and often times less expensive than the USA — so don’t feel the need to pack every single gauze pad or bandage. Definitely bring those specialty items you cannot purchase to your destination….the key is doing the planning and research in advance.
Moving Forward
For those who are suffering, you are not alone. Please take comfort in the fact that others relate to what you are going through and are here to support you get through this.
For those caring for someone suffering. THANK YOU. Your support is the glue that holds those suffering with this horrible disease together.
Sending virtual hugs and hopes that this story has been helpful.
