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Relationships, dating & more

Hidradenitis Suppurativa is a visible disease that can affect your relationships in a number of ways.  It can be difficult talking to friends and family about your hidradenitis suppurativa and how it affects your life.  You may avoid dating if you have a poor body image because of your hidradenitis suppurativa.  Hidradenitis Suppurativa may affect your relationships, but it does not need to control them.  Learn how to manage hidradenitis suppurativa—and your relationships.

Family Relationships

Your parents and family members know you better than anyone and can be a great source of support.  If someone else in your family has hidradenitis suppurativa, they can help you understand what it is like to live with the disease.  Other ways to interact with family members about your disease include:

Work with your parents and medical team to learn how to take an active role in setting appointments, asking questions, and expressing how you feel about treatment options.

Ask your family for privacy if you don’t want them to tell other people you have psoriasis.  Most of the time they would share the information with good intentions, but if you would rather not have them talk about your disease with others, let them know ahead of time to avoid embarrassment or hurt feelings.

Set an example. If you have siblings or other younger family members, you have the opportunity to be a great example of overcoming a hard situation.  By taking care of yourself, working on having positive self-esteem, and treating your disease you can be an excellent role model.

Dating

Having hidradenitis suppurativa may make you feel nervous about dating.  You may wonder if the person you are interested in will notice your skin. The fact is that most people with the disease have successful romantic relationships. The key is finding the right person that is worthy of your attention.

How do I tell a date that I have hidradenitis suppurativa?

It depends on the situation.  There may be no point in letting a date know about your hidradenitis suppurativa until you know whether you're interested in developing an ongoing relationship with that person.

Not everyone can understand that psoriasis does not affect one's ability to participate in a relationship. You can tell the person on your first date by sliding into the topic. You can talk about liking the beach or swimming and that the sun is very good for your psoriasis. You might mention a hidradenitis suppurativa-related appointment or event you attended recently.  Whichever approach you choose, remember that everyone has something different about him or her – hidradenitis suppurativa just happens to be something that shows.

What if I want to wait a while before letting them know?

If you want to wait to talk about your hidradenitis suppurativa, there are a few ways you can keep your disease under wrap until you feel more comfortable.  For starters, you can wear clothing that covers up the affected area.  This is the quickest and easiest way to keep your hidradenitis suppurativa from showing.  If you have it in an area that can’t be covered up, disguising it is the next best thing.  Check out some great make-up tips for those with hidradenitis suppurativa here.

Will hidradenitis suppurativa influence my ability to have an intimate relationship?

Intimacy is a very personal decision.  For those who choose to be sexually active, hidradenitis suppurativa will be a concern if you have it in the genital area.  It is mainly a worry because the hidradenitis suppurativa can become irritated, especially if it is flaring.  

Bullying

Being bullied happens sometimes whether a person has a chronic disease or not, but since hidradenitis suppurativa symptoms appear on the skin, it can make you a target for unfair treatment.  Recognizing bullying and being prepared ahead of time can help you deal with a situation if it comes up.

What is bullying?

According to StopBullying.gov, bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance.  This behavior is repeated or has the potential to be repeated over time.  There are three different types of bullying that can happen in person or online.

Verbal

    •    Teasing

    •    Name calling

    •    Threatening to cause harm

    •    Taunting

Social

    •    Spreading rumors (“He’s contagious!”)

    •    Embarrassing you in public

    •    Leaving you out on purpose

Physical

    •    Taking or breaking your personal items

    •    Hitting/kicking/pinching

    •    Spitting

    •    Pushing/tripping

What can I do if I am being bullied?

You have the right to a safe environment at school.  Hidradenitis Suppurativa is painful enough without adding hurtful comments or actions from others.  If you find yourself in a bullying situation, here are a few steps you can take.

Know That You Are Not Alone. Over 1 million in the United States and 30 million people worldwide have hidradenitis suppurativa disease. Starting pre-adolescence, there are many others just like you that have had to face bullies.  Check out Shane’s story to see how he dealt with teasing and unfair treatment from peers.

Surround yourself with friends. Find people that are kind and don’t seem bothered by your skin. Keeping allies around you that remind you how great you are can make the bullying feel a little more manageable.

Speak up. Calmly and respectfully tell the person bullying you that you have psoriasis, and that it is not contagious. If the mistreatment continues, don’t let fear keep you from telling a trusted adult about what is happening. If one adult is not able to help, find someone that can.

Be Safe. If you feel depressed, talk to someone you trust about it. Seeing a counselor or therapist can be a great way to work through your feelings and emotions in a safe space. If you are having thoughts of harming yourself, contact the National Suicide Lifeline at 1-800-273-8255. They have specialized resources for teens available.

Peer Pressure

There are two types of peer pressure: positive and negative. Positive peer pressure comes from friends and loved ones.  This type of influence encourages you to be your best self.  Some examples of positive peer pressure is a friend that studies with you and cheers you on when you take your SAT or a classmate encouraging you to try out for the soccer team.  These types of relationships build you up and are invaluable for living with a chronic disease.

On the other hand, negative peer pressure causes stress and often forces you to make decisions you are not comfortable with.  No matter how well you choose your friends and make wise choices, everyone experiences a negative peer pressure situation at some point in their life. An example of negative peer pressure would be someone your age using guilt to try to get you to go swimming or wear shorts when you would rather stay covered up.  When you find yourselves in these situations, be prepared.

Trust your instincts. If something doesn’t feel right, go with your gut and realize that the situation is not right for you.  This kind of decision-making is part of becoming self-reliant and learning more about who you are.

Learn to say no without feeling like you have to make an excuse or apologize.  True friends will respect your decision.

Make a plan ahead of time. Talk to your parents or another trusted adult about a key phrase or plan to use when you are in a situation that doesn’t feel right.  This could be as simple as a one letter text or a phrase to use over the phone.

I’m Still Me

Hidradenitis Suppurativa disease can sometimes feel like it is taking over your life.  It’s important to remember that even though you have this disease, it does not define who you are.  Your intelligence, character, and relationships will be the determining factor in life’s important decisions, such as your choice of work, whether to attend college, responsibility for being on your own and the kind of person you want to be.  People who have hidradenitis suppurativa lead positive and productive lives.  Often, they find themselves better adapted to deal with stress and change because of the skills developed when living with hidradenitis suppurativa.

Self-Esteem

How we think about ourselves shapes the way we interact with the world.  This is why having a positive self-esteem is so important.  Since hidradenitis suppurativa impacts the way you look, it can sometimes lead to a poor body image.  It is natural to feel anxious, angry and depressed, but it’s important to remember that there is nothing to be ashamed about.

Retrain your inner voice. If you find yourself thinking negatively about yourself, try to change the habit.  Follow the rule: don’t say anything to yourself that you wouldn’t say to someone else.  Take time throughout your day to stop and check how you are talking to yourself.

Surround yourself with positive people. Not everyone is going to be accepting of your disease.  Find the ones that aren’t bothered by your disease and are an encouraging influence.

Treat appropriately. If you are treating your disease, you are going to feel better physically and emotionally.  If you are still having flares and symptoms, talk to your doctor about other treatment options that can clear your skin.

Focus on the good. There is always going to be some degree of bad in our lives, but if you make that your focus, it is hard to see all the things that are going well.  Write down a few things each day that were positive. Over time you can look back on what you wrote down for encouragement on tough days.

Eat Right & Be Healthy

Part of feeling great and having confidence is taking care of yourself. Eating healthy and exercising doesn’t have to be boring or limit you from being able to hang out with friends or participate in activities.  The key is to be prepared by planning snacks and extracurricular activities ahead of time.

Portable Snacks

Banana Nutella Sushi

This fun and delicious snack is easy to make and packs a punch with 1 serving of fruit and protein from the nut butter.

Ingredients:

    •    1 Whole wheat tortillas

    •    2 Tbsp Nutella

    •    1 Banana

Instructions

Lay tortilla on a flat surface.  Spread Nutella evenly across entire tortilla. Then, simply add your peeled banana to the outer edge and roll up.  Slice into 5 equal pieces and place cut side up on a plate.  Top with your choice of fruit or nuts (optional).

Notes

    •    Any nut or seed butter can be used in place of Nutella

    •    For clean cuts, wipe off your knife between slices

    •    You can use flatbread, pita, or rice cakes in place of tortilla

Modern Ants on a Log

This classic snack takes on new life with these updated toppings. Start out with crisp, washed celery sticks and pick your favorite topping!

Greek: Hummus, olives, diced onion, diced tomato

PB Cup: Nut/seed butter, chocolate chips

Bohemian: Plain Greek yogurt, honey, trail mix

Fiesta: Chicken salad, diced peppers, and beans

The possibilities are endless.

Have a really creative Ants on a Log creation? Send your idea to [email protected]

Extracurricular Activities

Having hidradenitis suppurativa doesn’t mean you have to sit on the side lines.  Participating in extracurricular activities is a great way to learn new things and meet new people, so take full advantage of the opportunities you are interested in. To make your experience more enjoyable, plan ahead for anything you may need to accommodate your disease.

Pack an extra set of clothes. If you are having a flare, your skin has the potential to crack or bleed.  Be prepared by stashing an extra outfit in your bag.

Carry your treatments. Keeping your topical and over-the-counter treatments with you can be invaluable if you find yourself in a situation where you are away from home and need to treat.

Let coaches or instructors know about your disease. Telling the person in charge of the activity ahead of time about your disease can be beneficial if you need to modify your participation in the future.

Send Us Your HSselfie

Now that you have gained some confidence about living with hidradenitis suppurativa disease, show us what you like best about yourself! Submit your HSselfie to [email protected]  If you share it on social media, use #TeenCorner for a chance to be featured on our site!

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