HS Support Groups: Navigating Negativity and Reaping the Benefits

We want to feel buoyed when we participate in support groups – uplifted and lightened of the emotional and physical tolls hidradenitis suppurativa can take on our lives, right? So how do we deal with angry members, those people who threaten to bring us down? It can be tempting to quit or to respond with bitterness, but there are ways to keep the community healthy, and still reap all the benefits that come from joining forces with HS peers.

Think before reacting to angry comments

Anger can be expressed in many forms in both online and in-person support groups. Members might be put off by the way others respond to their posts, or by how hidradenitis suppurativa is treated by the medical community. They might be upset because they feel like, at this point in time, science should have a cure for HS.

Something to keep in mind as you encounter other HS patients is that no two experiences are alike. There are no standards of care for HS, and there haven't been for hundreds of years. Only in the last 20 years has the medical community acknowledged that HS isn't triggered by poor bathing practices. Patient experiences including neglect, mistreatment, gaslighting, and even outright disfigurement can lead to anger and medical PTSD, and for some patients, it can be really difficult to set that anger aside no matter who they are communicating with.

It is sometimes in our nature to respond to anger with matching anger (or sometimes disdain), but if we can take some extended time to think about how to respond with support, it might be an opportunity to turn the conversation around.

Remember that you have control

Of course, we all know people who want to know, "Why?" Why didn't you take care of that sooner? Why didn't you talk to your doctor? Why didn't you take that pill? Why did you use that cream? Why, why, why? The question can be frustrating and aggravating. This is another time when you have to take a step back and think about where they might be coming from.

Are they concerned about you? Are they curious about the medication or treatment? Are they mad? You have a choice, because this is a question. Can you give them an answer? Should you give them an answer? Is this complicated? Will it lead to more questions? (Will it ever end???) Maybe your first instinct is to explain everything, or maybe you want to say it’s no one’s business. There is no right or wrong answer. Remember that you have control over how you respond and react, and how the interaction makes you feel.

Your patience with fellow HS patients will pay off

If you can step back, and then respond to negativity with empathy and respect – you will probably find the effort is worth it. I listed some reasons for joining HS support groups in another article. Here are a few more.

• Find doctors who know how to treat HS: Support groups are a great resource for information about doctors. Maybe you are looking for a doctor in your local area or you need one for when you travel. Whatever the case, it can be helpful to get recommendations from people who have HS and to learn about their experiences. It’s not enough to find a good dermatologist; you need a dermatologist who actually treats hidradenitis suppurativa. You might also want to know how those doctors treat patients of your gender and in your stage of disease, and how much they know about different treatments.
• Learn how to search for local HS doctors: Again, support groups are great for that. But what if you want to know how to actually search for a doctor? I mean, yeah, you can use Google, but that method is not always reliable. Often, group members have been through the doctor search themselves and their advice can be like gold. If you can't find dermatologists in your region, ask the members, even if no one lives in your area. Recently, I answered a question for a woman about how she could search in her state, which is grossly underserved with HS doctors. She now has four offices to call.
• Get information about new treatments, medications and studies: Another invaluable benefit is the up-to-date information about medications and treatments support groups often provide. There is no way that I can be an expert on every HS medication and treatment. I also don't know about every study that is in the pipes. Every once in a while, fellow patients post valuable information that I can pass on or I use myself to start a discussion with my doctor. Not all medications are appropriate for all patients, but it's certainly worth talking to your doctor if a fellow patient says, "Hey, I had really good luck with ____ after being on it for 6 weeks, and I can finally wear short sleeves!" or something like that. With hidradenitis suppurativa, sometimes patients access information faster than doctors, especially if their volume of HS patients is low.

Hidradenitis suppurativa support groups can come in all forms and sizes

A support group doesn’t always have to be big and super organized. Right now, my need to be social is at war with my need to avoid pain and exhaustion. I shared this with a friend who also has HS and she suggested our own informal support group. We agreed to schedule regular online Zoom meetings, so we can stay comfortable at home but also see and hear each other speak. Thank goodness for technology, because it sure does fill in a lot of gaps!

Joining a support group and being vulnerable can be scary to the point where it can be paralyzing. I understand. Always remember you have the ability to control how much you share, and which topics you wish to discuss. Also, "no" can be a complete answer. So whether you are online or in person, offer your support to fellow members in whatever form feels best, but ultimately I do recommend you "join the club!"