Not actual patients.
IT'S OKAY TO ASK FOR HELP
Let's face it. Living with HS can come with many challenges.
I don't think people realize how physically painful it is—how prominent it is. People don't understand the symptoms that come with it.
— Emy, living with HS
Dermatologists who treat HS are aware of the feelings that accompany life with HS. Don't be afraid to ask for a referral to a mental health professional.
A therapist or psychiatrist can be an integral part of your healthcare team.
If you or anyone else is experiencing emotional distress or crisis, reach out for support by texting or calling the National 988 Suicide & Crisis Lifeline at 988 or 1-800-273-8255. Additional resources may be found at 988lifeline.org.
SHINE A LIGHT ON
YOUR IDENTITY
LIGHTBULB MOMENT
HS can leave you feeling powerless. In times when you feel alone with HS, it's important to remember that there's more to you than these painful symptoms.
There's a lot that goes into making you who you are. HS is just one part of that. Take a minute to reflect on your identity with the activity below.
Not an actual patient.
What makes you who you are? Think of how you identify yourself, your personality, history, and characteristics.
Try to think of 10 words that describe who you are and write them down. Here are some examples: friend, parent, hard worker, outgoing, kind.
Not an actual patient.
How do you live out your identity? Think about a time when you lived out one of your identity traits in a meaningful way.
Not an actual patient.
Remember who you are. You are so much more than your HS symptoms. Don't forget that! Take the identities you came up with today and live them out in your everyday life.
Whenever you're feeling down, return to this activity to check in.
BE OPEN WITH YOUR
LOVED ONES
Did you know? Up to 40% of people living with HS have a family history of an HS diagnosis.
It's important to be open with your family members about what you're experiencing. Talk about your symptoms and how HS can affect your lifestyle.
If you have a close friend or family member in your life, it's okay to ask for help with self-care, work around the house, or getting groceries.
SHINE A LIGHT ON
YOUR VOICE
LIGHTBULB MOMENT
Your internal voice—we call it self-talk. And sometimes, self-talk can be more negative than positive.
The way you talk to yourself matters. Let's reframe your self-talk to focus on the good.
CHECKING IN ON SELF-TALK
You could be experiencing negative self-talk. If you find yourself repeating negative phrases, feeling down about yourself, or feeling alone in your struggles, it could be negative self-talk.
Let's try controlling your self-talk; it just takes some practice.
REFRAME YOUR SELF-TALK
Let's do a quick activity. Think about the way you talk to yourself. What negative statements do you end up repeating to yourself? Take some time to write those phrases down.
Rather than continuing to repeat these statements, let's reframe your thinking into a positive mindset.
WHAT WOULD A LOVED ONE SAY?
It may feel awkward at first, but put yourself in the shoes of someone who loves you. Maybe it's a parent, sibling, friend, or partner.
What would they say instead? Try to restructure your negative statements into phrases of affirmation.
ADOPT POSITIVE AFFIRMATIONS
"I won't let HS get in the way of what I have planned."
"I won't let these symptoms affect my relationships with others."
"I deserve to enjoy today."
"I don't feel great right now, but I'm going to move through it and focus on what's positive."
KEEP IT GOING
How does it feel to see positive affirmations about life with HS? Did any other statements come to your mind?
It could take time to break a pattern of negative self-talk. Even if you don't get the hang of reframing your self-talk at first, it helps to try it.
Keep practicing and come back to this activity when you need to check in.
Want to save this activity?
Download a copy.
BE DIRECT
WITH YOUR
DERMATOLOGIST
Talking with your dermatologist about HS isn't always easy, especially when they may not be as familiar with the causes or symptoms. Sometimes, a quick appointment can leave you feeling like you haven't made any progress.
When you talk with your dermatologist, let them know how much you're relying on them. Here are some phrases that may help:
"I feel like I'm stuck with these symptoms. I need your help to learn what could help me find relief."
"I see you as part of my healthcare team. I want to know that you're in my corner and helping me navigate the road ahead."
"I really want to learn more about HS, but I need your help. Will you join me in learning more?"
Only you can explain what you're experiencing. Try to be open and direct. If you need some help starting the conversation, try taking the HS Patient Card from the HS Foundation to your next appointment.
FINANCIAL IMPACT
OF HS
Doctor's appointments, medications, personal hygiene supplies...the cost of HS is more than just emotional and physical. You may also have unexpected emergency care or missed days from work because of HS symptoms.
Steps for managing costs:
BE OPEN WITH
YOUR HEALTHCARE
TEAM
Talk about your financial situation and your insurance. Ask about your coverage for the medications or lab work that they recommend. There may also be over-the-counter or generic options for certain medications.
UNDERSTAND YOUR
INSURANCE
Look into your Summary of Benefits and Coverage to see the benefits, limitations, and exceptions of your plan. You can also find the formulary document, which shows the costs of different prescriptions.
ASK ABOUT YOUR
OPTIONS
When you visit your dermatologist or pharmacist, ask about savings options.