Sanne's story.

My name is Sanne and I'm 20 years old. All my life, I've been taking a detour from the norm. I was born at 33 weeks because my mother had preeclampsia. From the very beginning, I dealt with health problems such as asthma, pneumonia, intestinal problems, ear infections, and serious childhood illnesses.

I've been extremely anxious my whole life and slept very poorly as a result. My fears were extreme, and I regularly had outbursts of anger. At 9, I had a lot on my plate and developed an eating disorder (anorexia). I received therapy, and it gradually improved. But I started "starving" myself very early, which left significant damage. I was very insecure and didn't enjoy school, luckily I was able to transfer to a school that was a better fit for me. At the end of eighth grade, things went seriously wrong. My eating disorder returned, and not just a little bit. During the summer holidays, I was also admitted to the hospital. I could no longer go to school and lost myself. After years of hospitalizations, clinics, multidisciplinary clinics, closed wards, and day treatment, I was able to leave this chapter behind. It was anything but easy and a tough battle. And it became clear that I had ASD (autism), ADHD, and PTSD. By the time I was 16, I had fully recovered. I did, however, break down my intestines, which had always been very sensitive. I noticed I lost my appetite after I stopped having a feeding tube. My pediatrician told me it would return. But no, it got worse. During the summer holidays of 2022, I could barely eat. I'd be full after one bite and didn't feel like eating anything. My food also often ended up in the toilet due to all the vomiting. In September 2022, I had another feeding tube inserted. I immediately couldn't tolerate the feeding tube and had to be admitted. They thought I had another eating disorder, and they treated me accordingly. This turned out not to be the case. I was diagnosed with gastroparesis, or stomach paralysis. From that moment on, a lot happened. Countless hospitalizations, IVs, morphine pumps, ambulance rides, and endless duodenal tube insertions. I also stopped having POTS and OH, and I spent a lot of time in the ER after fainting somewhere. But eventually, things seemed to get a little "better." I tolerated my feeding tube through my bowel and had a gastric bypass, so the vomiting had decreased. However, my bowels were practically inactive. I developed a massive blockage, but I couldn't reach my doctor for weeks. Ultimately, I had to go to the ER and have a bowel irrigation. They had to inject 2 liters into my bowels over an hour. I immediately realized this wasn't good, and my gut feeling was right. When I had to have it again after two days, it was over. I could no longer tolerate the feeding tube and was in severe pain. I continued this for months, to the point where my life was in danger. I was extremely malnourished and had to start TPN as soon as possible. The TPN team told me there was a chance I wouldn't make it, and they had never seen anyone in such bad shape. But I did make it and was sent home with TPN. Things seemed to be slowly improving, but in September 2024, things went wrong. This was a long, extremely difficult hospital stay, and there was one evening when I probably wouldn't make it. But miraculously, I finally made it. I had to learn to walk again, and that takes time. I had a lot of bladder problems and regularly had a catheter. After three and a half months, I was allowed to go home, but three days later I was readmitted with sepsis. Fortunately, I recovered well. On January 25th, I had another catheter inserted and was diagnosed with bladder paralysis.

The period after I was diagnosed with gastroparesis was incredibly difficult. Doctors didn't believe me and were even convinced I'd pulled out my own tubes. I was treated incredibly poorly and lied to. This completely destroyed my trust. This was during pediatric gastroenterology. When I was 18, I saw an internist. It was clearly not a good fit. He didn't believe a word of my diagnosis or problems. He deliberately let me go to the point of malnutrition, but eventually apologized and admitted he'd misjudged the situation. The pain team diagnosed me with ACNES, which my internist disagreed with. He wrote an email to my parents behind my back that he didn't believe it. After a serious argument, I changed doctors. I'm now in the process of getting to know my new doctor better. My previous doctor doesn't even dare to look me in the eye or say anything anymore. It makes him uncomfortable, even though I've had a good relationship with him. But because my file has been tampered with so much, it contains unclear and incorrect diagnoses.

My illness affects my life every second. I have a nasty pain syndrome that dictates my life. I can't do much and have little energy. I'm also significantly underweight because I'm not gaining weight with TPN, which means I have little energy. I can't travel abroad at the moment because of all my tubes. I have a urinary catheter, a PICC line, and two catheters. I'm constantly dependent on my mother. This is quite difficult for me because I want to have my own life.

I have fixed routines; sleeping in is no longer possible because my IV is disconnected. I have to inject medication eight times a day and undergo other medical procedures like bladder irrigation.

My family has grown up with all my health issues and are used to me always being sick. Physically, the diagnoses weren't exactly a big deal in our house; it was just a label. However, the autism diagnosis was harder for my parents.

I have a great team around me mentally. I'm in a mental health clinic and have a medical psychologist and psychiatrist whom I really like. However, when it comes to physical health, I'm missing a good team.

What I always find difficult is that doctors often don't see beyond their own noses and often don't believe me. Once, someone even filled out a form in the ER that I was experiencing a condition, even though I had a different problem, and they refused to provide me with any care. It was very painful and infuriating that she filled out a form for me and clearly didn't listen.

I've always been a positive and cheerful person. And that's one of my strengths. I stay positive and cheerful because that's what gets me through the tough years. Of course, it's tough, and I have my down days and moments of crying. But I can push it aside pretty quickly and also use the bury-your-head-in-the-sand tactic.

I started my Instagram account, livingwithmylabels, in early 2022. At the time, it was mainly about autism, but gradually more and more topics were added. I share a little bit of my life every day, including the good and the not-so-good things. Apparently, many people enjoy it, and I now have 16,000 followers on Instagram. This is bizarre for me to realize. I get a lot of support from all the sweet messages and beautiful words. My goal with this account is to help and support people who are also struggling. I'm incredibly grateful that so many kind people follow me, and I feel less lonely. So I also connect with others in the same situation through social media, and that offers me a lot of support. Support means so much to me. Due to my long illness, I can sometimes feel very lonely because I don't have a large circle of friends. But I have the sweetest family and parents who are always there for me. And of course, all my dear followers.

My future is uncertain, as more and more organs continue to fail. This makes me anxious, but that's precisely why I try to make the most of every day. And I talk about it with my family, which is a source of support.

My goal is to be a teacher, and I hope to pursue a degree in the future. I've always wanted to be a teacher, and this is my dream. Is it feasible? I have no idea, but I'll do my best. Dreams are meant to be realized.

For anyone struggling, I have some really basic advice: talk about it. Be truly honest, and sometimes you need to explain things to doctors or healthcare professionals, whether they're good or bad. Ultimately, you know your own body best, and it's your life. And if you can manage it, keep a positive journal. This way, even when you're struggling, you can quickly find joy again. This helps me every day.