Opening up to your significant other can be nerve-wracking in any scenario, but revealing that you have a chronic illness like hidradenitis suppurativa (HS) can seem like a Herculean task.
How will they react? Will they be grossed out? Have they even heard of it and will I need to put together a Powerpoint presentation on what HS even is?
Thankfully, you won’t need any fancy slides and a laser pointer to let your partner know about a skin condition that plays a major role in your life. With clear communication and bravery, you can break the news without breaking your relationship.
Short answer: Yes. Yes indeed.
Some people imagine that no one could love them if they have HS. But that’s not true. And that’s not just us trying to give you a pep talk — nerds in lab coats know that HS needn’t be a barrier not romantic and sexual contact.
One study found that most people with HS had sexual partners, although a significant number experience difficulties in the bedroom.
Trying to hide your condition can have its own problems. Keeping a part of your life secret can lead to mental health issues.
One study found that confiding those secrets led to higher well-being and a greater sense of social connection.
HS does not make you unloveable or gross. If you have vision problems, you’ll likely wear glasses for a sizeable chunk of your life. HS is a health condition with visible effects in just the same way.
That’s all. And real relationships transcend any of that visual nonsense. You probably wouldn’t think “ugh, I’d never love a person with glasses!” Clark Kent is just Superman with a visual prescription.
Likewise, no one will have a problem with HS, especially when there’s clear communication about the issue and its realities in your life. If they really do turn their nose up, show them the door. And have T-Swizzle on at the absolute highest volume you can while they take their sorry ass home.
You don’t need to open your first date with “hey, guess how many painful lesions I have right now?” In fact, in the first few dates, it may be better to let your date see your personality, values, and radiant beauty first.
At the end of the day, your first few dates are going to involve two people (or more, if that’s your bag) assessing whether they enjoy hanging out. That should be fun, light, and baggage-free.
However, when the relationship cranks up a notch and genuine trust develops, have a conversation about HS. If you can, talk about it before you have sex, just so your partner knows what to expect and doesn’t start freaking out about STIs.
Most of the time, your partner will be absolutely fine with your HS. The real ones will also ask how they can accommodate your needs and show a strong intent to learn more about its impact on your life.
If they have a problem, they are the problem.
Start small.
You don’t need to whip out a 10-page report, strip naked, and use a laser pointer to identify every scar. Keep it simple. Start by telling your partner you have a skin condition, and that it’s not contagious or an STI.
People have negative reactions to skin conditions simply because they’re scared they’ll “catch it.” When you relieve that fear, your partner will understand that HS poses no threat to their health.
In the first conversation, reveal whatever you want within your boundaries of comfort. If you only want to say you have a skin condition, that’s fine.
You can also give your S.O. some reliable information on HS, so they can learn more about the disease on their own time. You live with it. You shouldn’t have to teach a course on it to everyone you date.
Over time, try to be open to discussion as much as you can. HS is a part of your life, and so is your partner. Letting them know about your symptoms and feelings can help them support you.
“These scars? Oh, I was fighting an army of tiny ducks who were armed with sticks, you see. I never stood a chance.”
Or, you could just be honest.
Often, scarring that seems awful to you is not a big deal to your partner. Tell them that your disease causes scarring and, if you’re comfortable, where it develops.
Later, you can show them the scars. They’re a part of your body and being completely open about them will provide a deep sigh of relief. There’s a distinct possibility your partner will find them actively sexy.
“Oh, so there were these knife-encrusted starfish, right, and—” Stop it. You have HS and you’re beautiful.
Some of the symptoms of HS can be embarrassing. But it’s better to share the burden. A ride-or-die partner will be proud of your strength in living with HS, not embarrassed by its effects.
If you’re experiencing a bad flare-up, severe abscesses, or strong body odors, let your partner know.
You don’t have to show them the abscesses if it makes you feel exposed or vulnerable. Just let them know that you may be in pain right now, there are areas of your body they can’t touch, and you may smell different than usual during the flare-up.
Because people usually hide their HS for so long, opening up about all the symptoms can be scary. Talking about abscesses and odors isn’t exactly pillow talk, but it also won’t be a dealbreaker if they’re right for you.
By talking openly about it and letting them see the more severe symptoms if you’re comfortable with it, your partner knows what to expect and can address your needs in the relationship.
HS goes beyond physical flare-ups. It may well take a toll on your mental health.
As with any other part of the condition, it’s important to be open with your partner. Talk to them about how you feel, and let them know that sometimes the disease gets you down. Most importantly, let them know the best way they can help.
Physical affection might not equal comfort for you. Some people with HS might only want hugs to make them feel better. Maybe your partner tries to give you advice on how to “fix” this and it only makes things worse.
Support comes in different forms for different people. It’s best to communicate with your partner on what works best for you.
If you don’t need advice, make that clear (in a nice way). Try saying “I just need a hug right now,” or “I know you’re trying to help, but I don’t want to be touched right now. I love that you’re listening to me, though.”
Be open with your feelings and the best way your partner can help. They just wanna be there for you. Let them — but in a way that work for you both.
For people with HS, sex can be stressful.
The exact cause of sexual dysfunction in people with HS remains unclear. But it’s likely that pain and embarrassment about flare-ups have something to do with it.
The disease itself doesn’t cause the dysfunction, but the shame around it can impact confidence and sex drive. We might sound like a broken record, but just be open and honest with your partner.
Yes, it’s not fun to talk about possible skin flare-ups around your genitals. But if you let your partner know in advance (and that it’s not an STI) it’s far more likely that instead of being freaked out, they’ll be understanding.
If you’re feeling any pain because of a sex position, tell your partner immediately. Don’t just suffer through it — you owe no one that obligation, and you deserve to have good sex, too. Work together to find positions that work for both of you.
Communication is key. If you hide your pain, you might lose interest in sex or feel resentful of your partner. Your partner might misconstrue pain and think they’re doing a bad job in bed.
To avoid all these hidden thoughts and resentments, try to be as open as you can. That way, you’ll have a bangin’ sex life (pun intended) and a significant other that’s truly a partner in crime.
It’s important to let your partner know that HS is a chronic condition that never goes away. Be clear that although flares might get better, the disease is going to stick around.
This isn’t meant to scare someone off, and shouldn’t if you’re dating someone who’s ready and able to take it on.
It’s just to let them know what to expect from the disease. You might need extra support sometimes and a partner that loves you will be more than willing to give that.
Asking for help is never easy, but in the long run it makes a huge difference. Your partner is there because they want to be a part of your life — so let them help you when times get tough.
If you’re in a lot of pain, let your partner know. Ask them for extra help with chores or tasks when you’re too tired or in too much discomfort to do it. When you’re down, it’s okay to ask for a little more attention or care to help you feel better.
It may also be better to specify the kind of help you want. If you think your partner will just know what to do, you’re setting yourself up for disappointment.
Maybe they think buying you a surprise gift will make you feel better, when you really just wanted them to do the dishes. Be clear about what you need. And remember you’re not selfish for asking for help.
Sometimes, you don’t know what you need. Say that. “I don’t even know what I want but I feel really crappy right now.”
Talking about it with your partner may not solve everything in the moment, but it will help you work together to find a solution in those harder moments with HS.
HS won’t prevent you from having a full life and relationship, but it may mean you need a little extra support sometimes. That’s totally okay. Be clear with your partner, and don’t be afraid to ask for what you need.
Revealing HS to your S.O. can be scary, but it’s the best thing to do. Start small, be open with your boundaries of comfort, and ask for help when you need it.
Your partner cares about you, so don’t be afraid to let them know specifically how they can help and when you’re in pain. Having HS does not exclude you from love, sexual fulfillment, or a support base.
With clear communication, you can live with HS and have a wonderful relationship. And if they’re an asshole about it, they can go be an asshole somewhere else.