Demi's story.
Living with a chronic illness
General information
Can you tell us something about yourself?
(For example your name, age, profession, hobbies)
Hi, I'm Demi, 21 years old, and I'm currently studying Teaching Assistant at Curio in Breda. In my free time, I love doing my own nails, hanging out with friends, watching TV shows, and taking regular afternoon naps.
What chronic illness do you have and when were you diagnosed?
I have Crohn's disease, a chronic bowel disease. I was diagnosed in September 2022.
What was the process like for your diagnosis? (e.g., quick, long, frustrating, or involved visiting many doctors.)
My process was hellish and took five years before they finally figured out what I had. I had countless visits to the doctor and hospital, and underwent many different types of tests.
Impact on daily life
How does your illness affect your daily life?
It actually varies from day to day. If I'm having a good day, I have no problems and everything's fine. I typically have to go to the bathroom three or four times. If I'm having a bad day, I can be in a lot of pain, sometimes needing to go five or six times, and I'm also very tired.
What adjustments did you have to make to your routine?
I had to completely change my diet. With Crohn's, what someone can and can't eat varies from person to person. In my case, I have difficulty with spicy food, nuts and seeds, red meat, brown bread, and alcohol.
How did those around you (family, friends, work) react to your diagnosis?
My parents responded quite well to this. They were finally happy to have a diagnosis and to know where they stood.
Physical and mental health
Which symptoms affect you the most?
Cramps, a lot of stomach ache and a bloated stomach.
How do you cope with the mental impact of your illness?
Actually, it's pretty good. I'm taking it into account and can accept it. Some days are better than others. It varies from day to day, and it also depends on how I feel.
Do you have any aids or treatments that help you? (e.g. medication, therapy, aids)
I take Prednisone, stomach protectors and extra vitamins.
Medical care and experiences
Do you have positive or negative experiences with doctors and specialists?
Very negative experiences at first. I felt like they just brushed it off and didn't take any action.
What would you like doctors to understand better about your illness?
That despite it not being one of the most severe chronic illnesses, it can really have a lot of impact on a person both mentally and physically.
What advice or treatments have worked well for you?
Advice: pay close attention to what your body reacts well or poorly to.
Treatments: the Prednisone treatment works very well (disadvantage - it is a fattening drug)
Support and community
Have you found support from peers or online communities?
No
What does support mean to you, and what helps you most?
Recognition, being able to talk about it and, above all, understanding.
Tips and advice
What advice would you give to someone who has just been diagnosed?
Listen carefully to your body. Only you and your body know what's good and bad for you. Discover what foods your body can tolerate well or poorly.
What advice would you give to healthy people about living with a chronic illness?
That not all illnesses are always visible on the outside. Be kind to each person and listen to what they tell you about their illness.
Future and hope
How do you view the future with your illness?
Sometimes I still find it a bit ambivalent. If I stay as stable as I am now, I have nothing to worry about, but if things get worse, there are a lot of unpleasant things coming.
Do you have certain goals or dreams that you want to achieve despite your illness?
My goal is that despite often being tired and sometimes having days when things aren't going well, I can still get my diplomas and eventually have a job without my illness affecting my work.
My dream is to become a mother, and then I really hope that my children do not inherit this disease from me.
Love,
Demi.