“I perceive my body as less attractive because of all the surgeries, and sometimes I’m afraid of startled reactions because of all the scars on my back.”
Relationships and sex are exciting topics, and they can raise many questions. How do I meet a nice boy or girl? What happens during puberty? Is my love reciprocated? How do I kiss? I want to have sex, but I don’t know how?
If you have a medical condition, starting a relationship or having sex can feel even more challenging and you may encounter more obstacles than your peers without a condition.
Making contact is the first step in forming a friendship or relationship. Sometimes it can be difficult to connect with peers, and your condition may bring additional challenges. This page is about meeting peers, what you might encounter along the way, and how to handle it in the best possible way.
If you have a condition, it can sometimes be more difficult to make connections with others and to deal with intimacy.
Because you may sometimes depend on your parents or caregivers, meeting peers can be more challenging. Going out isn’t always easy either: clubs or bars may not be wheelchair accessible or smoke-free, which can quickly become a problem.
Despite your condition, there are many ways to meet other young people. Sports can be a fun way, for example. You can also meet peers at work, during your studies, at a theater group, or at a youth center. Basically, you can meet peers anywhere, but you need to make an effort yourself. If going out is difficult, you can also meet other young people online, for example through social media platforms like Instagram.
The internet is a great way to connect with others. The anonymity of the internet allows you to get to know someone in a calm and safe way. It’s also easier to find young people who share your experiences and interests. On the internet, global boundaries disappear, and anything is possible. Although the internet can be a fun and effective way to meet people, you need to be careful.
Note: Privacy on the internet, especially on platforms like Meta (Facebook & Instagram) and Google, is poor. This is also an important reason why we created our own Community. Our Community is hosted in a safe environment in the Netherlands and complies with strict European privacy regulations.
YOU decide what you share, what you don’t, and with whom!
When you arrange a meeting online, pay attention to the following points:
Make sure someone you know knows where you are.
Bring a mobile phone with you and have the number of someone you can call in case of emergency.
Check online for more information about the person you are going to meet and see if it matches what you’ve been told.
Meet in a public place where there are other people around.
Arrange to meet in your own town or city.
Remember that you can always leave if you feel uncomfortable or if it’s not enjoyable.
Sometimes, having a condition can make it more difficult to form new connections, and friendships may not come as naturally. Making friends depends a lot on your own attitude towards your condition. If you feel very insecure and can’t imagine that others could like or enjoy your company, others may also be less likely to approach you.
What’s important to remember is that no one is simply handed friendships: everyone needs to take action to build them.
“At school, they don’t need to know everything. What does it matter to them anyway? They probably just think I’m a completely normal person. And, in the end, I am.”
Some people immediately share their whole life story when they meet someone for the first time, while others are quieter or even shut down. How do you make a good first impression? What do you share about yourself during a first meeting? Try to carefully consider what you do and don’t want to reveal. It’s also important to read the situation. One person may appreciate if you talk a lot, while another might find it overwhelming if someone keeps talking non-stop. You never have to share anything you’d rather keep to yourself. Get to know each other a little before sharing sensitive information.
When you meet new people, there will come a moment when you introduce yourself. You could, for example, talk about which school you go to or what kind of work you do, what your personality is like, or what your hobbies are. Think in advance about what to tell each person. Someone you only see once doesn’t necessarily need to know about your condition. But if there’s a chance this person could become a (close) friend, then it makes sense to share more about yourself and possibly about your condition. The important thing is that you feel comfortable with that person and are able to talk about your condition. This way, the other person can better understand you and possibly offer help if needed.
“On the outside, you can’t see that I always walk around with a catheter on my stomach. But when I went out to a club with my friends for the first time, I had a problem because everyone is frisked at the entrance these days. And I have no idea how I’m ever going to tell a girl about it.”
When you tell your future boyfriend or girlfriend about your condition, it’s important to judge the timing yourself. For example, telling them too early might be overwhelming or off-putting. On the other hand, if you wait several months before mentioning your condition, your partner might feel that you don’t trust them. Try to be open about your condition so it becomes a normal topic of conversation and doesn’t lead to awkward surprises in the future.
If you choose not to share anything about your condition, it can create anxiety about being “found out.” Try to put the challenges related to your condition into perspective as much as possible. A good dose of humor and self-deprecation can be an effective way to cope.
Het kennen van je eigen lichaam is bij seks en relaties erg belangrijk. Als je je eigen lichaam goed kent kun je tijdens het vrijen aangeven wat je fijn vindt en vooral wat niet. Voor iedereen is het spannend om de eerste keer naakt te zijn in het bijzijn van iemand anders, maar als je een aandoening of littekens van een operatie hebt, kan het nog spannender zijn.
During puberty, you go through many changes. For girls, puberty can start as early as nine years old. You develop breasts, pubic hair, underarm hair, and you get your first period. For boys, puberty typically starts around 9 to 11 years old. While girls develop breasts, boys’ testicles begin to grow. Boys also often develop facial hair, a deeper voice (“the beard in the throat”), and experience their first ejaculation. Besides physical changes, puberty can bring many emotional changes as well. Emotions can become stronger and change more quickly.
For certain vascular conditions, it’s possible that your body develops asymmetrically. This means, for example, that one arm or leg may be thinner, thicker, shorter, or longer than the unaffected one. It’s also possible that girls’ breasts develop unevenly.
In our community, we have young people who have experienced these things and are happy to share their experiences with you. How have they dealt with it?
What do you think about your own body? Are you satisfied, or are there parts of your body you feel less proud of? Do you still find yourself attractive, or does your condition make your body feel more like an object than your own? Try to focus on your positive qualities, because when you feel good about your own body, you radiate confidence—and confidence is attractive to a future partner.
It’s possible that you’ve had many negative experiences and, as a result, have developed a negative self-image. Keep in mind that forming relationships can be more difficult if you feel insecure about yourself. If you feel very insecure, try talking to others about it or seek help from a psychologist or other professional.
Masturbation, also called “self-pleasure,” can feel very good. It’s also helpful to get to know your own body well if you plan to be intimate with someone else. This way, you can clearly communicate what feels good and what doesn’t. It might also be useful to use aids or toys for self-pleasure. These can be purchased not only in adult stores but in various other places as well.
It’s important to know what you enjoy during intimacy, but it’s just as important to be able to clearly communicate your boundaries. For example, you might be okay with kissing someone, but touching under your clothes might be a step too far. Make sure you can clearly express how far the other person can and may go.
TIP: Setting boundaries
Clearly say if you don’t want something and explain why. Also pay attention to your body language—if you laugh while saying no, it might not come across as serious. If someone goes too far physically, it can be extra difficult for you to push them away, especially if you have a condition. So be very clear both in what you say and in your body language.
You can become aroused by an attractive man or woman. You can also get aroused by touching yourself, kissing, and having sex.
The first time you have sex, you might feel embarrassed about your naked body. That’s completely normal—it’s all part of the experience. Showing your body to someone for the first time is an exciting event. Try to remember that it might be just as exciting for the other person. Focusing on kissing and touching can help you forget about the embarrassment.
Sex can make a relationship stronger and more intimate, and it is often relaxing. If you have a condition, you might feel insecure about it.
The first time you have sex with someone is always exciting. You can never know in advance how it will go. Try to make it a fun experience together. If it doesn’t go perfectly the first time, just try again next time.
It is very important to protect yourself against unwanted pregnancies and STDs (Sexually Transmitted Diseases). This is done through contraception. There are different options available. Unfortunately, using contraception can sometimes cause problems if you have a condition.
The most commonly used contraceptive, the pill, may not be suitable for young people who are immobile, as it can increase the risk of blood clots. With conditions like Spina Bifida, but also Asthma, there is a higher chance of an allergic reaction to latex condoms. For more information about your condition and the use of contraception, it’s best to consult your treating doctor.
A condition can affect your sex life. Problems you might encounter include spasticity, difficulty spreading your legs, or fatigue. Your condition may limit certain sexual positions, reaching orgasm, stamina, or flexibility.
The most important thing is that you can discuss these issues openly with your partner or healthcare provider and find solutions together. Sex is an essential part of your life and your relationship, allowing you to relax and feel good.
Getting to know your own boundaries is very important. But what exactly is a boundary? Your boundaries will gradually shift over the years. They often move from French kissing, to touching and feeling under clothes, to naked intimacy and sex.
Besides being aware of your own boundaries, it’s also important to respect the boundaries of others. Try to discuss your boundaries together. If one person doesn’t want to go further, the other must trust that they will stop immediately.
Remember: Sex should feel good for both you and your partner. If something doesn’t feel right, speak up immediately.
STD is short for Sexually Transmitted Diseases. STDs are very common among young people and are usually caused by unprotected sex. Many young people don’t know they have an STD because it isn’t always visible.
Good hygiene is important. It feels nice to be clean and smell fresh. How can you take good care of yourself? Make sure to shower regularly, wash your hands, brush your teeth, put on clean clothes, and groom yourself nicely.
The future often offers many opportunities, but if you have a condition, you may face certain challenges. Can I live on my own? Can I become pregnant? How will having a child affect me and my condition?
Living independently or with others
Do you want to live independently (with support) later on, or would you prefer to live in a group? For more information about different living arrangements, see the section on Housing.
Having children
Becoming pregnant with a condition is often not straightforward, for example due to medication use or physical limitations. It’s important to discuss your wish to become pregnant with your doctor. They can inform you about the different options available.
There are also alternatives to pregnancy. You could consider adoption, surrogacy, or foster care.
There are other factors to consider if you want to have children in the future while living with a condition, such as heredity, physical abilities, and support in raising a child.
Heredity and fertility
If you are wondering whether your condition is hereditary, you can contact the genetics department of academic hospitals or consult our organization.
Parenting and support in raising children
As a patient organization, we have members of all ages, making us an ideal source of practical knowledge and experience. During our events, you have plenty of opportunities to meet others and learn from their experiences.