Debunking the myth: No one can understand what I am going through, and no one can help me.

Hidradenitis Suppurativa mythsm

Mid-HS flare-up, it can seem like nobody could possibly understand what we are going through. And if you have had HS for a long time, you may feel alone with it. But some people can help, and you are not alone.

Although HS is not rare, the general public may not be aware of it. This means your friends and family may not be either. You may decide to talk to them about it. Or you could seek outside peer support. There are plenty of options, including online and in-person support.

Let’s look at some of your options.

Online Support

Online support for hidradenitis suppurtiva

There is a fantastic HS community online. From Facebook groups to online forums, there are many people just like you. Over the past couple of years, I have gotten lots of help and advice from online groups. I know I would not know as much without essential peer support.

Eventually, you will find that you have the experience you can use to help others. This mutual support is helpful to you in and of itself. Helping others feels good and enables you to understand how far you have come. You can’t go through something like HS and have no knowledge.

And all you must do be is brave enough to reach out and join. If you are ready to take that first step, HidraWear has a Facebook group you can join here.

In-person Support

In-person support for HS.

In many countries like the US and UK, there are in-person support groups available. This kind of support may be beneficial if you are not very social media savvy. And sometimes, being in a room with your peers is comforting anyway.

Hope for HS operates in-person support groups in the US, which are endorsed by the HS Foundation. And HSConnect are a great source of support and information. In the UK, there are in-person support groups available from the Hidradenitis Suppurativa Trust.

Why not get in touch with one of these organisations? If you are in a region under public health restrictions, plan for the future. It can’t hurt to have the information.

Your Loved Ones

Support from your loved ones.

While it is true that most people know little to nothing about HS, it doesn’t mean they can’t help. Most people understand pain. And when it comes to their loved ones, most people want to help.

It is also true that people with HS might be embarrassed about their condition. Maybe your loved ones don’t know because you haven’t told them. If this is a conversation you need to have with someone, do it.

Make sure when you do, you know what you want to say and what support you need. Ask for help, and listen too. If you need more help with talking to loved ones about HS, HidraWear has an article here.

Bravery

Bravery is the name of the game here. If you believe nobody will understand, then you won’t tell anyone how much you struggle. If you never speak up, nobody could understand. Not because it’s hard to understand but because they are entirely unaware.

I like to think when I’m alone with something that there is probably someone in the world going through the exact same thing I am. And there are probably people who have overcome what I am trying to.

It’s weird, I know, because we put so much emphasis on uniqueness. But for me, that has to be lonely. And with as much access as we have to people worldwide, it has never been easier to get the help we need.

So, be brave. Reach out.

About the Author

Shannon hidradenitis suppurativa patient

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.

 

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