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You’ve Just Been Diagnosed With Hidradenitis Suppurativa (HS). Now What?

Posted on October 03, 2019

We all respond differently to information about our health. After learning you have hidradenitis suppurativa (HS), you might be scared or even relieved to have answers that explain painful, recurring bumps or ruptured boils in the armpits, groin, or inner thighs. No matter what you’re feeling, you’re not alone. On myHSteam, there are thousands of others who have been in your shoes.

You can’t figure out everything about HS at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.

Create Space for HS
It’s normal to feel out of control when you first learn you have hidradenitis suppurativa. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.

Put Everything in One Place
Storing all of your printed doctor’s visit summaries, pamphlets about HS, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system - a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.

Remember Your Questions
Keep a list of questions about hidradenitis suppurativa for your healthcare provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to your appointments so you can remember your questions and write down the answers.

Manage Your Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing any new doctor’s visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments.

Track Your Medications
Using an old-fashioned pill organizer is a great way to keep track of any oral medications that are part of your regimen. You can use a paper medication tracker, alarm clock, or your phone to track any topical or injected medications. If you’re comfortable using a smartphone, consider downloading a medication tracking app to manage your treatment schedule.

Reach Out for Support
It can feel overwhelming to reach out after receiving a hidradenitis suppurativa diagnosis, but you don’t have to face your diagnosis alone. Support from loved ones, your medical team, and other people with HS is crucial as you embark on a treatment regimen and adjust to your new normal. There are a few basic steps you can take to start building your network of support.

HS Communities
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or be comfortable joining an in-person support group. That’s ok. Connecting with members on myHSteam can be a first step towards finding support. Your community on myHSteam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with hidradenitis suppurativa or want to celebrate a victory.

Healthcare Providers
Many hospitals and medical practices offer resources that extend beyond your medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.

Friends and Family
Sharing your HS diagnosis with friends and family can be hard. They may misunderstand your condition and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear.

Learn More About HS
You might not have heard of hidradenitis suppurativa before your diagnosis, but now you probably want to learn more. Your healthcare provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your healthcare provider or patient liaison if you have questions about something you’ve read.

Here are a few resources to get you started:

You never have to feel alone when you’re living with HS. Members on myHSteam are always available to answer questions and offer encouragement when things get rough.

Here are some conversations from members on myHSteam about facing a new diagnosis:

If you have a pressing question, you can go straight to the Q+A section.
You can also read more about how to get started on myHSteam.

For the newly diagnosed, what information are you seeking?
For HS veterans, what do you wish you knew when you were first diagnosed?
Share in the comments below or directly on myHSteam.

A myHSteam Member said:

Hi my family.. Thanks so much for this group I feel much better especially knowing that I'm not alone, I have all the support from the group. My boils… read more

posted about 2 months ago

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