If you are visiting family or friends, the topic of your Hidradenitis Suppurativa might come up. Like any chronic illness, HS has symptoms and lifestyle adaptations. You may need to take medication. Or you eat differently from everyone else at the table.
You also may have talked to your loved ones before now. Close family and friends may be fully aware of your condition. At the same time, some family and friends may not be. Either way, we have some tips to help you with the scary part, getting started.
If a loved one is asking how you are, they likely want to know. Your instinct might be to play down how you feel. That’s natural. Most of us don’t want to worry those around us. But try to be honest about how you feel.
Little white lies can make you feel lonely. You don’t need to go into any detail if you don’t want to. You could start with something like ‘I’m not feeling great today.’ Honesty is a great way to open a conversation.
That said if you honestly do not want to talk about something, don’t. It’s your body and what you decide to say about it is up to you. You don’t owe anyone this conversation.
Take your time
When you have been dealing with something for a long time, the urge to blurt it all out can be intense. So, I ask you to take a deep breath and stay mindful. That way, you can say what you want to say and limit the risk of you sharing something you didn’t mean to. If your loved one is supportive, there will be plenty of time for them to understand fully. Be clear before the conversation on what you want to say and why. And don’t rush yourself.
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If you are nervous about talking to family and friends about HS, start out small. In my experience, the first thing people ask is what HS is? That’s understandable as so little is known about the condition. I usually start there. However, you may prefer to start with how you feel and how your HS affects you. If you decide to start there, be prepared for questions. And remember you are under no obligation to share all today.
Use online resources
Maybe we are biased but using online resources like the HidraWear blog can aid you in explaining HS. There’s a lot to it and if you can’t answer all your loved one questions that’s ok. For your own benefit, you should have some go-to resources you can consult when you have questions. Share them with your loved one. It will take the pressure off you to have all the answers and allow them to do their own reading if they wish.
Ask them to come along to your appointments
Talking is one thing. But making someone a part of your HS management gives them something practical to do. Also, nobody likes visiting the doctor. And let’s face it, those of us with HS have more challenging time with doctors than most. So, why not ask your friend or family member along. They can ask the questions you might forget to ask, and they can ask their own of a professional. That way, they are better equipped to support you when things are bad.
Say thank you
When someone is supportive, don’t forget to say thank you. It’s a very small way of showing someone you appreciate their effort. If you haven’t been through HS, supporting someone who has can be difficult. It can be hard to know what questions to ask or how to comfort you. Lots of people don’t realise that just listening is the best thing they can do. Showing appreciation is positive reinforcement. It tells the person they are of some help. That should keep the lines of communications open.
And its also just the right thing to do.
One more thing
As always, there is one caveat to these tips. That is, you are never obligated to talk about your condition. Some people in your inner circle may want to support you, and others might be nosy. You can tell some people and no others. That’s boundaries.
Talking about your condition is never easy. But there are rewards to be reaped from being brave enough to open up. You can access more support and feel less alone. You may find others have been through similar situations. And you are improving the awareness around HS.
But it must always be your choice. If you decide to broach the subject, follow our tips and take care of yourself. We hope these tips make things a little easier.
About the Author
Shannon Sweeney is MA student in Community Research & Journalism from Ireland. She is also living with HS and has a keen interest in lifestyle, wellbeing and hidradenitis suppurativa.