As a young child, I didn’t really feel different from others. My parents had always taught me that my port-wine stain was simply part of who I am and that I wasn’t otherwise any different from other children. Besides, everyone has something. Of course, there were moments when people would point or whisper, but I always tried to respond by briefly explaining what it was. I would usually add that next time, they could simply ask the person concerned directly instead of talking about them (especially when that person can hear you anyway).
When I was around ten years old, things became more difficult. At that age, children start to make clearer distinctions between boys and girls. I didn’t fit the stereotypical image of a “typical girl” (apart from my port-wine stain), and in my experience that did cause some difficulties. Children can also be unkind to each other, so I did experience that period as unpleasant. It was often the same children who were targeted by teasing, and I was one of them. I became increasingly aware of myself, and with that came growing insecurity. As puberty began and more insecurities surfaced, my port-wine stain started to play a more prominent role.
Where I used to be happy about my unusually strong arm, I now felt less comfortable wearing certain types of clothing. I rarely wore sleeveless tops or open shirts, while most of the girls around me were very focused on that. I also started to enjoy swimming less, simply because it meant wearing swimwear. This wasn’t solely due to my port-wine stain, but it certainly was an extra factor that added to insecurity at that age. All of those insecurities can really hold you back. In my own experience, I also lagged behind somewhat when it came to boys. I found them interesting, but I didn’t dare to act on it very much. Going out in new environments was easier, for example, because it was often quite dark and my appearance was less visible. It helped that towards the end of secondary school my group of friends wasn’t particularly active when it came to relationships, so I didn’t really feel like an outsider. I felt very accepted within that group, but I wasn’t really able to talk openly with them about my insecurities regarding my port-wine stain. Not even at home with my parents.
My first boyfriend definitely helped me learn to accept myself more during that time. In a relationship, you tend to have different kinds of conversations. I clearly remember discussing it in depth, partly because it took me longer to trust someone and to feel comfortable being seen naked. He was incredibly kind to me and truly reassured me. I genuinely believe it’s very important to also focus on all the things you do have, can do, and find beautiful about yourself. Most of the time, you are your own biggest obstacle—other people see you as a whole person, not as just your port-wine stain.
Now that I’m a bit older, I realize even more how unfortunate it was that I worried so much about my appearance back then. People actually get used to your port-wine stain very quickly. Even now, there are still situations where people who have known me for quite a long time say they never noticed it at all. Meanwhile, you yourself think it’s incredibly visible to everyone. At that time, I also thought I wasn’t beautiful and that I was overweight, while looking back at photos now, I clearly wasn’t! Everyone experiences things in their own way, but what I would like to pass on is that in the end, it really isn’t all about appearance—not even in relationships. Yes, of course it plays a role, but there are so many more important factors. I think I’ve been relatively lucky: apart from the psychological impact, I experienced very few issues from my port-wine stain until I was about twenty. Unfortunately, physical complaints did start around that time, but I won’t go into too much detail about that here. Since the family day, I’ve realized that there are many people who experience far more physical symptoms, often already at a much younger age.
When I was eighteen, I moved out of my parents’ home straight away and started studying. You immediately enter a new environment with a lot of space to discover who you are and to define yourself within that setting. It felt incredibly good to have a fresh start. I truly felt like almost a different person and gradually gained much more confidence. Of course, I still had my insecurities, but the difference compared to before was enormous. Contact with boys became much easier, and I found it much easier to open up. In fact, no one has ever made comments since then that I experienced as hurtful.
My current partner, whom I’ve been with for almost seven years now, has always paid “little” attention to my port-wine stain—in the best possible way. He simply sees me for who I am and actually considers my port-wine stain something special that belongs to me. It makes me who I am. He often accompanies me to hospital appointments if I want him to, and he’s as involved as possible in everything that’s going on. Of course, it will always be different from experiencing it yourself, but I feel a great deal of support from him. In the end, the medical journey is also something deeply personal. It takes a lot of energy and time to keep track of everything yourself, especially when the medical world still has so many unanswered questions. At times, you start to doubt your own experiences because so much information is shared in a short period of time, and it’s not the first time that information has been contradictory. In those moments, it’s incredibly helpful to have someone with you who is informed and willing to ask critical questions. He lives this life with me every day, so he can help keep both me and the doctors I speak to sharp. I’m learning more and more to trust myself and my own experiences, because ultimately, you know very well whether something helps or not, and whether someone truly takes you seriously. Still, being able to talk things through, to check what was actually said, or simply to express how difficult and frustrating all the tests, treatments, and hospital visits can be—that in itself is incredibly valuable.
