Kaily's story.

Living with a chronic illness

General information

Can you tell us a little bit more about yourself?
I'm Kaily Drees, 27 years old, and I grew up on the farm. I've always done this with heart and soul, and despite the pain, I can't do it anymore.

I love dining out, exploring new places, dancing, exercising, and traveling. I could go on and on; so many things make me happy! I love being around animals all day; that's where I'm truly happiest. I have two cats now, so thankfully I don't have to live completely without them and can snuggle them up.

What chronic illness do you have and when were you diagnosed?
On June 30, 2019, I had a serious accident that required over 50 stitches in my forehead and on top of my head. Everything was severed down to my skull from a dog attack. As a result, I suffered nerve damage (facial pain/trigeminal neuralgia).

I think my veins aren't quite right either, because I often suffer from swelling in my face. In 2023, I was also hit from behind by a truck, which didn't help either. Since then, I've also had intense neck and shoulder pain. Hopefully, whatever else is going on will be investigated soon. I was also recently diagnosed with fibromyalgia.

What was the process like leading up to your diagnosis?
This is a really long story. I underwent immediate surgery at the hospital by a plastic surgery team, which took three and a half hours. Afterward, I was sent home without explanation with high doses of antibiotics and painkillers. A week later, the stitches had to be removed because otherwise, the dots on my face would remain visible.

I have complex PTSD from my childhood. From a young age, we always had to work—no whining, just keep going. So I asked if I could go back to work. The assistant said yes, which should never have happened. Two days after the surgery, I was back at work; that pattern was so deeply ingrained.

My first GP in Westerhaar helped me tremendously. He diagnosed nerve damage and helped me plan my future. Unfortunately, he himself became seriously ill and had to retire. He was truly a GP with a heart of gold.

After that, I saw various general practitioners and specialists for six years, but I was passed from pillar to post. Everything was blamed on mental health. I tried absolutely everything: from neurologists to acupuncture, but nothing helped, and I simply didn't get any help.

The second-to-last GP wouldn't even give me painkillers, saying things like, "Do you always want to take pills?" Or, after I looked up what it might be: "Are you going to play doctor now?" It was all in my head, they said. Because of all this, I became depressed and developed social anxiety disorder. I thought I was crazy, that I was making a fuss. Until my boyfriend came along one day and said something about it.

I kept wanting to see a different GP, but that didn't work until I moved. Now I finally have a good GP and I'm on the waiting list at Roessingh.

How does your illness affect your daily life?
Actually, everything. Social life, mental health, work—everything is at a standstill.

I missed out on so much. I've been sick since I was 19. While others were going out, going on their first vacation with friends, having fun, and discovering themselves, my life stood still. I found that really hard.

I even deleted my social media for a while. I often posted photos to show how great my life was, but they were old photos. It was a form of concealment and escape.

I now spend 95% of my days in bed or on the couch because I'm always in pain. You become a survivor instead of a thief. That also causes you to lose a lot of friends.

How did those around you react?
Everyone was shocked. I was almost gone. If I hadn't escaped for a few seconds longer, I wouldn't have been alive.

Of course I looked scary, my youngest sister said I looked like a monster.

My best friend Anne Wil cared for me and supported me every day. That's so precious to me, I still think about it often.

Work was a different story: initially there was understanding, but later it faded. You get less and less understanding. It's barely visible, but it's very present. I tried to persevere, until last year.

I was working 60+ hours and thought, "If I work a little less, it'll all work out." But that wasn't the case. It was this or nothing.

The last company was great and I still keep in touch with them, but it just didn't work out anymore.

Physical and mental health
You're alone a lot, because you spend 95% of your time in bed. That's really tough mentally.

I found it especially difficult to see others growing: pursuing careers, buying houses, traveling, making money. My life was at a standstill. It felt like failure.

A lot of people don't even know I'm not working anymore because I'm so ashamed of it. I still say I work on the farm.

Living between four walls takes a toll on your mind. And then there's the fear: Will this ever get better?

Financial worries make everything even harder. And I wonder: can I ever raise children with these limitations?

Even the basics, like showering and getting dressed, take so much energy and are painful. Many people don't understand that, and I find that difficult.

Which symptoms affect you the most?
The unbearable headache and the extreme exhaustion that comes with it.

How do you deal with the mental impact?
I'm trying to accept more that that's just the way it is. Constantly getting upset, angry, and sad doesn't help you move forward.

I'm trying to be happy with my body. I gained weight from medication and started binge eating. Because I don't exercise much, I gained 40 pounds. Now I'm back to a healthy weight, but I'm not getting slim anymore. I'm insecure about that.

I'm better at communicating what works and what doesn't. I lost people because of that, but I'm grateful for that now. The right people stay. My circle is small, but it feels so much better.

Resources and treatments
I use a lot of medication that reduces the pain a little: tramadol, medication for nerve pain and medication to dilate the blood vessels.

The Hot Cuddle helps me. I place it under my neck and it's nice and soft. I sleep with it every night.

I can't have anything on my shoulders, so off-the-shoulder tops, strapless bras, and adhesive bras are a real invention.

At the physiotherapist I get massages, but not on my head or face, I can't tolerate that at all.

Medical care and experiences

Do you have positive or negative experiences with doctors and specialists?
This question makes me angry again... what a drama. GPs who refuse to help you and blame everything on mental health. DBC Rehabilitation Center, where they say pain is "all in your head." If you're insecure and don't stand up for yourself, you have a hard time as a chronically ill person. My boyfriend often stands up for me. Luckily, I'm now on the waiting list at Roessingh.

What advice or treatments have worked well?
My partner gives the best advice. Because of him, I was able to quit my job and I know I don't have to be ashamed of it. He goes with me to appointments, investigates everything, and fights alongside me. I really needed that. Unfortunately, nothing has really helped so far.

What do you wish doctors understood better?
Listen to people, they don't come for nothing.
It's already a hurdle to knock again.
If you don't know, please pass it on. Don't pretend it's all in your head.
Not everything is visible. Don't just fill in anything.
Help as much as you can. A doctor's office should be a safe place.
Facial nerve pain is among the top 1-2 worst pains that exist. Don't let people suffer unnecessarily.

Support and community

What does support mean to you, and what helps you most?
I have a small but wonderful circle around me. I talk online with kind people who are also chronically ill. That helps enormously and makes me feel less lonely. Support for me means knowing you're not forgotten. My two best friends, my sister, and my in-laws often check in on me, which I really appreciate.

Tips and advice

What advice would you give to someone who has just been diagnosed?
Listen to your body. Don't worry about what others say; they don't know what you're feeling. Stand up for yourself. Ask for help. Put yourself first and be kind to yourself. Rest. Never give up. Let it sink in and process it. Seek help. Fight for pain medication and the right treatment. Connect with others who have been in the same situation.

What do you want to share with healthy people?
Love your life. It can change in a single day. Stop judging. Listen without comparing, and remember: you can't expect the same from someone who is ill.

Future and hope

How do you view the future with your illness?
Since I learned I also have fibromyalgia, I've been very anxious. The future feels uncertain. I'm normally positive, but the longer this goes on, the harder it gets.

I'm worried because it's a struggle to get the right help. I'm afraid I'll have to give up everything, and I'm barely making ends meet financially.

Do you have certain goals or dreams that you want to achieve despite your illness?
I try to enjoy the little things. My biggest dream is to be happy and healthy again, or at least have much less pain. I'd like to have two children and a dog. Ideally, I'd like to live on a mini-farm.

I hope to one day be able to work with animals again or to set up something online to help others, so that I can plan my days based on what works for me, without having to worry about money.

Love, Kaily