Telling People About Hidradenitis Suppurativa
Dating, Partners, Family & Friends
Ugh, we ALL dread this part. It’s been going well and things are progressing.
Do I tell them?
Do I not tell them?
Do I just hope they won't notice?
How do I tell them?
What do I say?
How do you even begin this conversation?
Telling people about your Hidradenitis Suppurativa can be overwhelming and scary. We'll help with some ways to do that here.
We all know and understand this feeling, the feeling in the pit of your stomach when you get to the point in a relationship where you know it’s time to tell your partner about your HS. We have all been there. It’s necessary and only fair to your partner to be given an opportunity to ask questions and inquire about HS on their own.
HS can rob us of so many things in life. It can be a self esteem destroyer, an emotional toll taker, a pleasure robber. It makes us insecure in our own skin, feel unworthy of love or that we’re ‘too gross’ to be loved the way others are or that we don’t deserve that because of HS.
HS is a liar.
We are all worthy of everything that anyone else is, in fact, in some cases we’re more worthy. We fight harder to feel normal, we scratch and claw to feel beautiful some days, we fight to keep a smile on our faces, we overcome pain and being uncomfortable most of the time to enjoy life, we are warriors.
We are strong, we are determined, we are overcoming constantly. We fight harder to enjoy life than most others do, and someone special will understand and appreciate that about you.
Below are some tips about how to tell your partner about your HS and at what point in the relationship you may feel comfortable doing so; this also translates well to discussing with your family or friends.
Please don’t expect people to understand what this is truly like. We can’t help people to know what it feels like when you just had an abscess burst in your groin while you’re at work, or under your armpit while you’re at the gym, or having to take your bag with you to the bathroom every time to dress your wounds, or that you can’t bend down because the abscess under your breast is so inflamed it is painful to move.
This is something that people truly won’t understand until they’ve lived it with you; be sure your expectations are realistic.
Best Ways to Explain HS
HS is an inflammatory skin condition consisting of extremely painful recurring abscesses.
HS is debilitating and chronic.
Abscesses can develop anywhere that hair follicles are found, which means anywhere on the body with the exception of the palms of our hands, soles of our feet and lips.
HS is not contagious.
HS is not an STD.
HS is NOT due to poor hygiene.
There is no cure for HS and the options for treatment are limited.
HS has a huge impact on our self esteem, emotional, and physical well being.
The more comfortable you are talking about your Hidradenitis Suppurativa with others, the more you become accepting of yourself and others will naturally follow your lead.
First Dates or Newly Dating
Try to keep in mind that it’s only a date. You are not obligated to pursue a relationship with this person, nor do you have to be intimate right away.
You do not have to disclose any health information on the first date, or even the second date. Take a deep breath and focus on having a good time!
Here are some suggestions to help you cope with your HS and feel better about yourself as you walk out the door to meet your date:
Wear comfortable clothing: If you know that tight-fitting clothes exacerbate the problem, wear clothing that is loose-fitting
If you're worried about drainage, wear darker clothing
Don't forget your HS emergency kit
Ladies, treat yourself to something that makes you feel good or beautiful! Get your hair cut, buy a beautiful new accessory to wear on your date, get a manicure or do something special for yourself.
Gentlemen, same for you, treat yourself to something that makes you feel good! Buy the shirt you’ve been eyeing, purchase the cologne you keep passing up or treat yourself to a fresh haircut.
Dating has been going really well, I really like this person; now what? When the time is right, be honest. At some point you may become comfortable with someone and want to become intimate. This is when the thoughts may begin to overcome you, which are completely normal.
Will I smell?
How do I explain that I want to keep the lights off?
What if one of my abscesses breaks?
To eliminate the overthinking and stress, wait until you have an emotional connection with someone and feel comfortable enough. Allow them to learn who you are as a person, on the inside, and let them get to know your personality.
Make sure this is someone you want to pursue a relationship with and vice versa. When you’ve reached that level, educate them about your HS. Some ways to verbalize this include telling them you have a chronic, debilitating, auto inflammatory condition.
If they are willing to learn more about this you can guide them in the right direction at that time. Help them understand what HS is, as well as treatment options and coping strategies that you use.
If you're not comfortable talking face to face about this, write a letter, send an email, or do it via text or a phone call. Whatever makes YOU feel the most comfortable, there is no right or wrong way to do this.
Not Everyone’s Cup of Tea
It is important to understand that not everyone is capable of handling a situation where the other person has a chronic illness, regardless of what type of illness. If you find that they shy away or need time to think and process, do not take this personally.
If you feel this is the person you want to pursue a relationship with, it's only fair to be honest with them so they can make the best decision for themselves and so you know how they feel. It is best to know this sooner rather than later and before deep feelings develop.
You might feel like you’re the only person who’s ever had to deal with any of this, but most of us have had to go through this at one time or another, and for many of us, several times.
You are worthy of love. Read that again, you are worthy of love. YOU ARE WORTHY OF LOVE. You deserve to find someone who will love you and care for you regardless of your HS. In most cases, the person will be accepting of your chronic illness and will most likely end up being your biggest supporter and cheerleader!
Emotional Well Being
Hidradenitis Suppurativa can negatively impact your self-esteem, and therefore, your dating and social life. We recommend that anyone with HS attend counseling. Finding a counselor to talk to can help you cope with the emotional effects of the illness and process your feelings about the disease.
Seek out support from others with HS. Online support groups can be a great resource and comfort. You can build relationships with others who know what you’re going through and they may be able to offer suggestions.
Find additional mental health resources here.
Content in this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking treatment because of something you have read on this website.
Written by Denise Panter-Fixsen
Edited by Brindley Kons