Even for the best of friends, a diagnosis of Hidradenitis Suppurativa can be challenging. You may want to support your friend; you just don’t know what to say. Let alone what to do. In truth, you can’t make this disease go away. But you can be there for your friend and make things a little easier.
Today we are going to talk about five ways to support your friend who has just been diagnosed with HS. And the best part is you probably do all these things in other situations. A good friend is a good friend, regardless of the challenges your friend faces.
Nevertheless, here are some helpful tips.
It is also normal for you to want to say something to comfort your friend. It’s okay if you don’t know what to say. Just be there. Sometimes listening is the practical thing you can do.
Getting a life-changing diagnosis like HS is complicated. On the one hand, it can be great to finally know what’s happening to your body. But it also might be overwhelming or frightening. Really there are so many feelings.
Potentially the scariest part for anyone who is diagnosed with HS is that it may get worse over time. It also may not. There isn’t any way to know. So, whatever your friend is feeling is normal. And merely being there to listen when they need to vent will be a great help.
Help them research HS
I remember when I first learned, I had HS. My first instinct was to learn all I could about the disease. I wanted to know what would happen next. And what I could do about it. But I just ended up feeling overwhelmed.
Help your friend, to research HS. Read about it and brainstorm ideas with your friend. There was a time when there wasn’t much information available, but fortunately, nowadays there is. There are lots of resources online about HS. This blog is an excellent example if I do say so myself.
Researching HS will help you understand the disease better too. Part of the reason you find it hard to support your friend is you may not know what HS is. Even doctors have difficulty with that one sometimes. But educating yourself will make it a lot easier.
Offer to accompany them to medical appointments
Medical appointments have an exceptional way of making us feel vulnerable. So, next time your friend is worried about a consultation, offer to go with them. If the appointment is for a surgical procedure, then maybe drive them home afterwards.
Your friend may want you to be in the room with them. They may want you to ask questions they can’t. Or just remember the information they are too overwhelmed to process just then. Even if you are only sitting in the waiting room, having somebody, there is a comfort.
Team up for Lifestyle Changes
One of the most helpful strategies for managing HS is a lifestyle change. Giving up smoking, losing weight, and diet changes are all recommended. For some, they do wonders and others not so much. Either way, your friend may want to try.
Here’s the problem, long-term lifestyle change is hard to sustain. Habits take a long time to form. And on top of that, changing information or circumstances can make it hard to know what’s right. When your friend was diagnosed, their doctor probably gave them some pointers, start there.
Health psychology consistently finds that people who have support in changing a lifestyle habit are more likely to succeed. That is so long as the person is not pressured or shamed into change. Maybe you both decide to get fit. Or try new recipes together. Whatever you do, have some fun with it.
And if you need a little help, check out our article on forming and maintaining habits here.
Don’t play HS down
Luckily, HS is not fatal. And many people live with and manage HS successfully. However, for many, it is debilitating. You may be tempted to comfort your friend by telling them it’s not so bad. Or it’s just like acne.
I can see why you might think that helps. But it doesn’t. Lots of people with HS have had symptoms for years. According to the Irish Skin Foundation, it takes an average of eight years to get a diagnosis. So, your friend already knows how bad it is. Saying it’s fine will make them feel invalidated, not supported.
All of this comes with one big caveat. Always ask before you help. You may want to be there; your friend may not want that at all. Alternatively, ask what they need. Your friend may have all the above handled. But could really do with a distraction. Or a babysitter. In a fervour to help, we often forget to check with the person first.
Most importantly, make sure your friend knows they can come to you if you need help. You would be surprised at the difference a stable support system can be. Be the support person, you would want.
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About the Author
Shannon Sweeney is a psychology and sociology student from Ireland. She is also living with HS and has a keen interest in lifestyle, wellbeing and hidradenitis suppurativa