Caithlyn's story.

Living with a chronic illness

 

General information

 

Can you tell us something about yourself?
My name is Caithlyn, I'm 24 years old and have a healthy son for four months. I'm married and run my own large, successful driving school.

What chronic illness do you have and when were you diagnosed?
I have type 1 diabetes and was diagnosed when I was just three years old.

What was the process like leading up to your diagnosis?
I don't remember much about it myself. But I do remember going to the doctor often and seeing my parents at home frustrated afterward. It turned out that this was because they didn't feel heard about my symptoms. I don't know how it went from the doctor to the hospital. But I was in the hospital for eleven days, in the children's ward. I didn't have many unpleasant experiences afterward.

Impact on daily life

How does your illness affect your daily life?
I have to be honest, it doesn't bother me much. My blood sugar is very stable, especially since I got an insulin pump during my pregnancy. It was before that too, but then I had to administer my insulin with a needle, for example, at school, in the car, on the patio, etc., in front of everyone. I found that very annoying, especially during my puberty. I often didn't do it, which caused my blood sugar to be very unbalanced. But my diabetes has never put me in dangerous situations. For example, I did find it difficult to tell someone for a long time during dating. I was afraid of being rejected.

What adjustments did you have to make to your routine?
I have to remember to monitor my glucose before eating, after eating, an hour after eating, several times during the day, after waking up, if I wake up during the night, before going to bed, before disconnecting my pump to shower, before exercising or walking, and afterwards, and adjust or correct it if necessary, or flush out carbohydrates with insulin.

In fact, I have to constantly monitor my glucose around all the everyday things that someone else can do without thinking.

How did those around you (family, friends, work) react to your diagnosis?
My parents had a hard time with it. Especially my father. My mother is a different story, but I don't think she ever really cared. I do know they were nervous about leaving me at birthday parties, the first few days of school, playing at friends' houses, sleepovers, swimming lessons, and things like that.

Physical and mental health

Which symptoms affect you the most?
Actually, my daily life runs smoothly. Sometimes it's a bit off for a day because my glucose levels are unstable for some reason, and then I immediately notice that it literally makes me sick, weak, and nauseous. And often very tired too. But in the long run, it takes a lot of mental energy. Sometimes I suddenly get completely exhausted from having been working on it for so long without a break. Then I'm mentally out of it for a week or more. I've encountered the so-called "diabetes burnout" more than once.

How do you cope with the mental impact of your illness?
As I mentioned above: things are actually always fine for a while. With my sugar, with me, and mentally. But sometimes, usually very suddenly, I'm completely "out of it." Then it's too much. Then I've been thinking too long, too often, too much, and haven't been able to take a break.

Do you have any specific aids or treatments that help you?
I use a continuous glucose monitor (sensor), an insulin pump and/or pens, and I regularly visit my diabetes nurse, as well as a psychologist.

 

Medical care and experiences

Do you have positive or negative experiences with doctors and specialists?
So far, many positive experiences. But that also makes it very difficult for me to switch to a treatment team closer to home. I currently travel 45 minutes each way for an appointment that lasts about 20 minutes. It's more than worth it. Still, they would appreciate it if I sought care closer to home. But I'm afraid that will lead to negative experiences.

What would you like doctors to understand better about your illness?
I have a very good treatment team, so I really have nothing to complain about here!

What advice or treatments have worked well for you?
“You are you, Caith, you are not a pancreas.” “You can’t always get it right.”

 

Support and community

Have you found support from peers or online communities?
Yes! For a year now, I think. Before that, I actually didn't want to surround myself with people who were going through the same thing. I thought it was easy for me, and I didn't want to have their stress, annoying thoughts, problems, and irritations, or be dragged into my life. Until I joined a group of (new) mothers, or women trying to conceive, with type 1 diabetes.

What does support mean to you, and what helps you most?
For me, support means being heard and seen when things aren't going well, or being allowed to vent when things haven't gone so well. No one has to "fix" anything for me or my illness. I don't need recognition or pity. I just need to be "there with my illness for a while."

 

Tips and advice

What advice would you give to someone who has just been diagnosed?
It's hard. It's tough. There are still countless moments where you encounter things you won't like, things you have to skip, things you're still finding your feet in, or things that are frightening.

But you can do everything anyone else with a functioning pancreas can. And the fact that you can do that without a functioning pancreas makes you a real winner in this life! And that's perfectly fine, even if there's "nothing" to celebrate.

What advice would you give to healthy people about living with a chronic illness?
That every body works differently, and that it's not as simple as comparing it to something else. Everyone experiences it differently. Everyone copes with it differently. And your tips about "cinnamon stabilizes your blood sugar" or "you shouldn't eat so many sweets" really won't get us anywhere. Let us learn. Let us grow. And let us live with our illness ourselves.

 

Future and hope

How do you view the future with your illness?
If things continue as they are now, I'm really looking forward to it! I don't necessarily need to experience the solution for/against type 1 diabetes. As long as I can be myself, with my illness, and perhaps with my shortcomings as a result, as long as I keep my husband and child.

Do you have certain goals or dreams that you want to achieve despite your illness?
Phew! Tough! I believe there's nothing I can't do, despite being limited and always having to consider a hundred things regarding my glucose, carbohydrates, and insulin. I don't think there's anything I want to achieve "despite" my illness.

But after being a child, a teenager, a young adult, pregnant, and a mother with diabetes, I would absolutely love to speak to (small) groups of young people with diabetes. To share experiences, to talk about how I look back on how I managed my diabetes in high school and now. What the difference is. What I've learned, experienced, learned, and grown into.

Talking about how everyone has it, experiences it and explaining how it could be done differently.

 

Love,

Caithlyn