I’ve had Hidradenitis Suppurativa (HS) for the last ten years. It’s a condition that impacts my life greatly but I do my best not to let it control my life and my routine. Over the last decade I have figured out some things that have made managing life with hidradenitis easier.
1. Keep a bag of supplies on hand at all times.
It’s important to keep certain things like gauze pads, tape, and spare clothing on hand wherever you go. It isn’t convenient to tote these things around in your car or to find a place for them at your desk at work, but you’ll be so happy when you develop a sore suddenly that leaks onto your clothes and needs immediate attention. When you have everything you need right there with you, you don’t have to go all the way back home to tend to yourself.
2. Order the supplies you need online.
This is a practical, money saving tip. I use to go to the drugstore multiple times a week to buy gauze pads. It was expensive and time consuming. I save time and money by ordering supplies online. Oftentimes you can get items in bulk and save money. I also find a larger variety of products online.
3. Join a support group, IRL or online.
This really does help in my everyday life. Although in the area I live I wasn’t able to find an in-person meeting, I have found many great groups online. Use social media to find people who know what you’re going through. I have a great support system in my personal life but they cannot understand everything. People who have HS will understand your daily struggles. And you’ll learn things from them, too—like what products to get, and how to handle certain situations with a doctor. They just get it, and the HS community is awesome.
4. Learn to say “no” without feeling guilty.
This one is really hard for me. I get so caught up in commitments that I feel guilty saying no when I don’t feel well. But if you don’t feel good, it’s best to rest. Give your body a break even if it isn’t for a whole day. Your body is fighting a hard battle and needs rest.
5. Find yourself an emotional outlet.
It’s hard to live with a chronic illness, so it’s important to find some way to vent regularly. Depending on your interests, journaling, walking, hiking, or playing an instrument might help. Personally, I feel better after blogging. I like sharing my story, knowing that doing so might help others. Find whatever outlet you need for a sense of relief so you don’t get overwhelmed.
6. Educate yourself about wound care.
The more you know about caring for wounds the easier your daily life will be. If you cannot see a wound care doctor because of logistics or insurance then do your own research. There are a lot of good sources online and in books. There are also a lot of wound care products available that are not necessarily specifically for HS but are helpful nonetheless. There are products and techniques that will aid your wounds in healing faster and staying clean.
7. Be your own advocate.
Speaking up for myself is an important part of my daily life. It is not easy to tell people about HS and I do not walk down the street telling everyone I see that I have HS. But, when there is an outlet for me to share my condition I do so. Because the more people in my daily life who know what HS is, the less shame there is for other patients. You don’t have to go into great detail with every person you talk to but you should not be ashamed. You did not cause this disease. This disease is a part of your life that you are doing your best to handle.