Rafke's story.

Can you tell us something about yourself?
(For example your name, age, profession, hobbies)
My name is Rafke, I'm 26 years old, and I live in South Limburg. I graduated as a nurse, but unfortunately, I haven't worked in this profession for three years.
My hobbies are dancing, playing the saxophone and I like to be creative.

What chronic illness do you have and when were you diagnosed?
In 2003, I was diagnosed with type 1 diabetes. In 2013, I was diagnosed with chronic fatigue syndrome, and in 2021, I was diagnosed with gastroparesis, neuropathy, and insulin antibodies. In January 2023, I had a pancreas transplant.

What was the process like leading up to your diagnosis?
My grandfather had type 2 diabetes, so he recognized my symptoms pretty quickly. The connection was quickly made, and I was soon seeing my doctor and later in the hospital.

The road to antibodies and gastroparesis took longer. With the antibodies, I was constantly told I was causing my high blood sugar by snacking too much, because at a certain point, doctors were at a loss. From 2018 to 2021, I was in and out of the hospital, spending weeks or even months on an IV. Until one day, a final test was initiated, and it proved accurate: I was producing antibodies against insulin, so I wasn't faking it.

This path has been very frustrating. At one point, I even started doubting myself, wondering if I really did it to myself.

How was the process leading up to your diagnosis? (For example, quick, long, frustrating, or involved visiting many doctors.)
The road to gastroparesis was also a long one. It was repeatedly dismissed as irritable bowel syndrome. We ultimately discovered it by chance when, due to my high blood sugar, I underwent a naso-duodenal catheter insertion via gastroscopy with tube feeding, and I had no further symptoms. Then I had a gastric emptying test, which revealed that I had severely delayed gastric emptying.

The road to the pancreas transplant went quite quickly. In February 2022, I had my first appointment at the LUMC in Leiden, where I received a wealth of information. Shortly after, I was readmitted because my blood sugar levels were so extremely high and low that it was dangerous. I was able to have my preliminary tests performed at a regular hospital, and everything went very smoothly. In November 2022, I received a definitive approval for the waiting list, and in January 2023, I was notified that an organ was available for me.

Impact on daily life

The impact on my daily life is huge.
I walk around 24/7 with a backpack filled with tube feedings, which I receive directly into my intestine through a nasogastric tube. These pumps are quite heavy, and I have to constantly be careful not to get caught on anything with the tubes. I also take a lot of medication, including one to prevent rejection of my transplanted pancreas. This has to be done at strict, fixed times. I rest a lot. After every activity, I'm completely exhausted and really need to recover. I also use a wheelchair to conserve my energy.

How does your illness affect your daily life?
My freedom is gone. I can't just spontaneously go out and do something fun; I have to think about everything and anticipate the consequences.

What adjustments did you have to make to your routine?
I try to maintain as consistent a routine as possible throughout my day and week. I plan ahead and consider the consequences. If I plan to do something fun one day, I know I'll be out of it for two to three days.

How did those around you (family, friends, work) react to your diagnosis?
My family also struggled with my diagnosis. Fortunately, we quickly found a routine and made it our own. Diabetes was part of Rafke and our family, and it didn't stop us from doing fun things.

Physical and mental health

Which symptoms affect you the most?
I'm currently experiencing a lot of neuropathy in my feet, a result of high blood sugar. We can't seem to get it under control with pain medication. I also get nauseous easily due to gastroparesis.

How do you cope with the mental impact of your illness?
I've been struggling mentally for years, and I make no secret of it. I see a psychologist every week and am currently also doing art therapy. Once a week, I have a counselor at home with whom I can also discuss my difficult moments.

Do you have any specific aids or treatments that help you?
I use my wheelchair and shower chair a lot and am currently undergoing art therapy.

 

Medical care and experiences

Do you have positive or negative experiences with doctors and specialists?
I have had both positive and negative experiences with doctors and specialists.

Before it was discovered that I was producing insulin antibodies, the doctors were at their wits' end because they couldn't make any progress with the results. They'd often come into the room with statements like, "So, did you like the chocolate bar?" and "We're going to search your cupboards for candy, because what you're doing isn't right."

But I've also had good experiences. The specialists after my transplant helped me tremendously and were very knowledgeable and friendly.

What do you wish doctors understood better about your illness?
In any case, if someone says something isn't going well, it's assumed. Empathy is often lacking. Doctors would then storm into the room with six of them, and then I wouldn't dare say anything.

What advice or treatments have worked well for you?
To listen to my body during recovery and to sound the alarm if I had any doubts. When I called to say I wasn't sure, I received excellent care and was seen at the ER .

Support and community

Have you found support from peers or online communities?
Yes, the peer support community is really helpful. Through my social media account, I've met a lot of great girls who are going through the same thing, and we relate to each other's stories so well.

What does support mean to you, and what helps you most?
That someone else understands you and listens to you. What helps me most is feeling someone else takes me seriously. Something I've been missing for years.

 

Tips and advice

What advice would you give to someone who has just been diagnosed?
Keep sounding the alarm when something doesn't feel right and keep listening to your body.

What advice would you give to healthy people about living with a chronic illness?
Take others seriously, listen and learn from others.

Future and hope

How do you view the future with your illness?
Right now, it feels a bit like the world is standing still. I hope this will improve in time and that I can look forward again. I hope my organ continues to function well in the coming years and that my gastroparesis remains stable.

Do you have certain goals or dreams that you want to achieve despite your illness?
I would like to raise awareness about gastroparesis and organ transplants.

 

Love,

Rafke.