So You Think You Have HS - Now What?!
Last updated: April 2023
Maybe you saw that episode of Dr. Pimple Popper and realized the lesions under your arms/legs/groin/back/neck/etc. look surprisingly the same, maybe you have been googling symptoms and came across HS, or maybe you have a family member who has been diagnosed, and now you’re wondering if that ‘cystic acne’ could be something a little more sinister.
Either way, finding out that you might have a chronic illness can be a real punch in the gut. This community is here to help you every step of the way and make this journey as easy as possible for you. Here are some steps you can take if you think you have hidradenitis suppurativa.
Track your hidradenitis suppurativa symptoms
Start keeping a journal of some sort that tracks when your lesions start, where they start, how they progress, your pain levels, whether they ‘break’ (open up in some way, usually accompanied by leaking fluid, pus, and/or blood) or recede back into the body.
I use the app Daylio, which is a free customizable program you can use to track moods and symptoms. You can enter multiple entries a day and add photographs to each entry to help you explain your situation to medical professionals. This is also a great way to figure out what your triggers are!
Call your doctor
It is important to get a diagnosis as soon as possible so you can embark on treatment. HS often goes undiagnosed or misdiagnosed, with people waiting an average of 5-7 years for a proper diagnosis. HS is a disease with 3 stages, but if caught early enough you can slow down or even halt the progression of the disease! Getting treatment as soon as you can will make a huge difference in your comfort levels.
See a dermatologist
Whether your general practitioner/family doctor gives you a diagnosis or not, seeing a dermatologist is a necessary step in your treatment journey. Not all dermatologists are well versed in HS, but they should have a better understanding of how this condition needs to managed and should at the very least be able to refer you to someone who IS familiar with HS.
Don’t be scared to get a second (or third) opinion
HS was once considered a very rare disease - when my father was diagnosed in the 1980s, he was one of 20 people on record with the CDC that had diagnosed Stage 3 HS. Now, 40 years later, 2-4% of the world’s population has a diagnosis! While we’ve certainly come a long way, there are still many medical professionals who have no idea what HS is, never mind know how to treat it!
Do not be afraid to advocate for yourself and ask for a referral to get a second opinion. HS is often misdiagnosed as cystic acne or written off as an abnormal boil without any further investigation, and this can really set you back when it comes to getting the appropriate treatment.
Connect with the HS community!
Being here is a huge step in the right direction! As research is still fairly new for HS, you can learn a ton of tips and tricks for living with HS from fellow HS warriors themselves. Lived experience is a wonderful tool to use, especially when HS is new to you. This community is a beautiful, welcoming place that offers a boatload of support - whether you just need to vent about the pain or have any questions about a procedure your medical team wants you to try, talking to other people who have been where you are can bring you immense comfort.
Having HS can be scary, embarrassing, and difficult - but you don’t have to face it alone. Taking these steps might seem intimidating at first, but I promise you that treatment is worth it. It will be a long journey, but it will be one you’ll be so glad you embarked on once you start to feel better! There is no shame in asking for help, or being a chronically ill individual. Try taking even one of these steps today, and get that ball rolling!
When you need to vent about HS, who do you turn to first?