"I've had the privilege of becoming a medical doctor, but also had the misfortune of being a patient."
In my first blog, I wrote about the treatment of unexplained physical symptoms such as fatigue. It always generates a lot of discussions. As a patient, sometimes it's difficult to explain where the resistance to the current approach comes from, healthcare providers find it difficult to understand. I myself have started to see everything very differently because of what I experienced as a patient. Today I share part of my story. It is a story of a mind full of ideas, dreams and ambitions and a body that can't keep up.
A story of chasing dreams and especially having to give up dreams. A story of a long and lonely search for care, a road that often ends in disappointment and misunderstanding. It's something that has to change. Not just for me, but for everyone else with a similar story.
As a child I was an active girl. My passion for singing and dancing started in the playpen and it has never gone away. I also played outside a lot, preferably playing football and swimming all day long. When I was 15 years old, I went to the doctor for the first time with complaints of fatigue. I was increasingly tired, didn't wake up rested and everything I did took more and more effort. The doctor had my blood checked for Pfeiffer’s disease, but the test was negative. Nothing to worry about, I just had to exercise a little more. But I was into street dance, school gym and I cycled to school for 5 days, 1.5 hours a day? All he could say then was that I would cycle very slowly, and I went home.
"I studied medicine, that was a dream come true. I was in love with my boyfriend and had a good time at a student association. And yet I was tired every day. Exhausted."
I myself attributed my symptoms to boredom and puberty and I hoped for improvement when I started studying. A few years later, things went well in many ways: I studied medicine, (always have been my dream to become a medical doctor), was in love with my boyfriend and had a great time at a student association. And yet I was tired every day. Exhausted. Where other students went to party, I went to rest. I spent many days in my ten-square-meter student room.
For some distraction, I sometimes watched political debates or phone-in games for hours. I rarely did go out and I also avoided alcohol, but I always felt like having a hangover.
The old (young) me, jumping off the rocks during our holiday in France I loved swimming and adventure! My dream was to be a doctor and a choreographer.
My new GP referred me to the hospital. A global investigation was done, but nothing was found that explained my symptoms, both on a somatic and psychological level. Although I did not meet the criteria for Chronic Fatigue Syndrome (CFS), I was still eligible for a treatment program. An exercise test was never done, nor was there any physical or occupational therapy guidance. I started working with a self-help program, with help via email. The program consisted mainly of CBT/GET, the most well-known therapy for fatigue. CBT stands for Cognitive Behavioral Therapy, in which you briefly examine and adjust your behavior and thoughts. GET stands for Graduated Exercise Therapy, where you gradually build up your activity and fitness. Improvement was promised to me, they suggest a cure was even possible. Suddenly we went from “we don't know what's going on” to “there's nothing wrong with your body”.
With the help of the program, I started to use a fixed sleeping rhythm and I tried to monitor my limits more strictly. Once you got to a basic level where things were going reasonably well, you could build up the activities again. But unfortunately, I didn't find a base level where it felt okay. As soon as I got out of bed I was tired. I boosted myself: “Once you're out, I'm sure you'll be fine,” but I wasn't. When I didn't get much further with the therapy, a consultation was not possible, so I received advice via email:
ADVICE: STOP WATCHING YOUR FATIGUE, TRY NOT TO PAY ATTENTION TO YOUR BODY. Divide your activities and start building activities.
Stop registering the fatigue, don't talk about it with others and try to focus all attention on the gradual build-up.
Reading this makes me angry and sad. This therapy has been the beginning of a search for care, a road full of disappointments and injustice.
You have to imagine you are a sporty, young girl and that you can no longer manage to become your old self. That you still have your ambitions, dreams and responsibilities, but you notice that it just doesn't work physically. That you are too tired to shower, have to limit your social life and become depressed because you want to, but can't. Suppose you receive an email like this: don't think about it, don't focus too much on your fatigue, don't talk about it anymore. I now realize how much these kind of statements have affected me. It's incredibly lonely to be chronically ill and to be encouraged to keep it to yourself.
I grew up in an environment of down-to-earth, hard workers. When the GP told me that there was nothing wrong, I did not want to be found to be a poser. I felt my body couldn’t keep up, but I kept getting the idea it was my own fault. “If you think you are tired, you will feel tired.” Such nonsense, I know now, but harmful nonsense. I pushed myself forward with these kinds of wrong assumptions. "Keep moving! Ah, you should still be able to cook, right? Eating healthy is important! Come on, you can stand when you’re on a train, you're a young girl!" And so I went on. Nausea, trembling, sweating, sometimes even vomiting.
My body was screaming for rest, but the therapist advised me not to go to sleep during the day, that would only make it worse. That's how I learned that my feeling wasn't right and that I had to ignore it. When I indicated that the therapy was not working, they told me "oh well, doctors are often the most difficult patients" It's bad that people don't take you seriously, but it's even worse that you learn not to take yourself seriously anymore.
"It's bad that people don't take you seriously, but it's even worse that you learn not to take yourself seriously anymore."
I stopped the therapy prematurely and was on my own again. With a mind that wanted to, but caught in a body that couldn't. A kind of lockdown, but every moment of the day, with no perspective of improvement and that while the rest of the world does move on. Every day you ask yourself what could be wrong: Have I done too much? Or did I lie down too much? Did I eat something unhealthy? Am I not positive enough? It is disastrous for your personal development if you keep looking for the cause within yourself and you become disappointed in yourself if you apparently do not know how to turn the switch.
As a patient with unexplained medical syptoms, you have just as much to deal with as with an explainable illness: the uncertainty when you wait for results, not being able to participate in society anymore, having to give up things that are normal for someone else. You know the pain of a chronic patient, but you are not treated as a patient. “You should not see yourself as a patient, that only makes it worse” And that makes the battle even more difficult. I was discouraged to ask for help from the people around me, although I could really use it. I had to beg the GP for referrals, to the specialist for additional research. I started to avoid doctors, so as not to be known as a 'shopper'. The lack of interest and incomprehension of healthcare providers is persistent and hurtful. I sometimes hear from patients that they sometimes find the struggle with loneliness and misunderstanding even more intense than the disease itself.
My parents saw me struggle with fatigue, saw how I had to recover on the couch at the weekend, how I had to give up my hobbies and my job in the supermarket. They tried in various ways to support me in my dream of becoming a doctor. But because I was now completely in a survival mode and blocked my feelings, they were not even able to estimate how it really went.
"Recognition and genuine interest are things that I have missed very much as a patient."
The internships were terribly tough. I tried to cut off my feelings, hiding behind a mask with a smile, because I wanted to pass my studies so badly. I had an adjusted arrangement for chronically ill students (a miracle that this was still arranged) and I studied as little as possible, but I had to fight every day to stay upright. The long hospital corridor became torture and I tried to avoid surgery as much as possible, because standing still was the worst of all. If I had to sit on a stool, I would slowly push it back so that I could lean against the wall unnoticed. Unnoticed, yes, because I had previously been commented on my "disinterested attitude."
I didn't often get sympathetic responses, but I did get comments. How on earth did I want to become a doctor, if I failed to keep up with the internships already? Why did I always get the internship in a hospital close to home? I didn't have a real illness, did I? Every intern is tired, so explain what makes you so different.
I tried to set my limits, but I was told I had no choice. It was to continue in this way or to stop my studies after 4 years of hard work. But who gives up an ultimate dream for something - again and again that doubt was fed - that may only exist in your head?
After graduating, I started working as a doctor in a nursing home. I was so happy, my dream had come true! I had a very good time, but after a while of working I deteriorated considerably. My body was failing. I was almost bedridden and completely incapacitated.
Recognition and genuine interest are things that I have missed very much as a patient. And then I'm lucky that I became a doctor and then was taken quite seriously, like when getting benefits. Despite that, I still received no care and guidance. I already had an “unexplained” label and then interest and empathy quickly diminish. New developments are also not kept up to date, you have to keep up with that yourself.
If it had been up to my doctors, I would have stopped my search after the first psychological treatment “You just have to accept it.” was said very quickly, but that is way too easy. On one hand they say: you have to accept it and on the other hand they say: there is actually nothing wrong. That contradiction only makes the acceptance process more difficult. Living with continuous exhaustion is terrible (especially at a young age) and you don't just switch a button with acceptance. Lonely wandering I searched further: physiotherapists, psychologists, respiratory therapists, medical specialists, orthomolecular doctors, medical fitness. I always remained critical of the offer, but used my knowledge and perseverance to always improve a few percentages.
"Only after 11 years of symptoms,
I received an exercise test and a tilt test, but unfortunately the diagnosis was missed then, so the diagnosis was only made after 17 years(!)
Having previously received treatments for Lyme disease, I was finally diagnosed with POTS in 2020. This diagnosis has explained and confirmed a lot for me. Several times I asked doctors to continue searching, as I thought there was something wrong with my blood pressure, but I was not heard. I asked them to describe some medication, only to try, but they wouldn’t. Only after 11 years of symptoms, I received an exercise test and a tilt test, but unfortunately the diagnosis was missed then, so the diagnosis was only made after 17 years(!)
POTS stands for Postural Orthostatic Tachycardia Syndrome. a disorder of the autonomic nervous system. In short, the autonomic nervous system is the part of the nervous system that regulates processes that go on unconsciously, such as breathing, heart rate and blood pressure. When someone stands up, the blood sinks down due to gravity. Normally, the autonomic nervous system then causes a rise in blood pressure and heart rate, so that blood still flows to the brain. With POTS, this process goes wrong, causing the heart rate to go up extremely high and too little blood is pumped to the brain. This causes all kinds of complaints, such as exhaustion, nausea, neck and shoulder pain, heavy arms and legs and cognitive complaints. There are different forms of POTS. The cause is not yet known, it occurs more often in women of childbearing age and it is also regularly found after infections.
More information: https://www.nhs.uk/conditions/postural-tachycardia-syndrome/
Fortunately, due to long COVID, attention for POTS is increasing. People are now finding out that 'just building up condition' is not just good. That has always been brushed aside with me and other patients under the guise of 'wrong patient beliefs'. “Stay positive, don't get anxious, keep moving.” For years I pushed through and exhausted my body. So it was not my own wrong beliefs, but the wrong beliefs of healthcare providers that put me further behind.
I still spend most of the day in bed. Every day it remains a battle between what my head wants and what my body can do. Fortunately, thanks to the medication and all the adjustments/rest, I have improved somewhat. Unfortunately, we cannot say that about healthcare. For example, I would like to do a suitable rehabilitation process, but I do not qualify for this because of my complaints. I don't get a chronic indication for physiotherapy either. "You can do a psychological process and otherwise you can figure it out yourself", is unfortunately more or less the summary for me and many others.
For years I pushed through and exhausted my body. So it was not my own wrong beliefs, but the wrong beliefs of healthcare providers that put me further behind.
As I mentioned in my previous blog, there is absolutely nothing wrong with psychological counseling. A symptom such as fatigue can also arise or be exacerbated by psychological complaints such as trauma or stress, so it is good to pay attention to that. In addition, everyone has pitfalls and as a new patient you have to learn to deal with long-term illness. I have also discovered some pitfalls myself. For example, I'm quite ambitious, so I quickly cross my boundaries and you have to find a way in that if you don't have much energy. I also had to learn to let my feeling in again, having previously been taught to put it away.
But I have always hoped that someone would find me interesting enough to really examine my physical complaints and not send them away with some cynical remark. What a difference it would have made if the POTS had been examined and treated earlier. It would also have made a difference if people had stayed with "we don't know" and If I had learned to listen to what my body was saying. How I wish therapists would pay attention to the struggle with all my losses, instead of constantly emphasizing that I wanted too much. That I didn't have to discuss with my psychologist about depression, while there was actually a very logical grieving process. That I was not seen as stubborn when I tried to explain my feelings. That someone had thought along with me for possibilities, and would give me the idea that I was not alone. How I wish I had someone who would just listen to me.
I hope I now can be the caregiver that I have missed so much myself.
If only to save one 15-year-old girl a lot of trouble.
* Thanks to the caregivers who have seen and helped me.
There aren't many of them, but they've been important to me, a light in the dark.
** I deliberately anonymized the quote, because I do not want to harm the name of the therapist in question.