For as long as I can remember there were little things wrong with me. I got the flu at least 6 times per year. My colds lasted from November until March every single year. I grew up with sharp stabbing pains in various parts of my body, they called it growing pains.
I remember clearly I was 14 years old and sat in class. All of a sudden I got such sharp stabbing pains in my upper arms that I fell off my chair. For the next years tests followed, but there was never anything found. The pain in my muscles was untracable.
The pains could not be classified as growing pains anymore, but since they were untracable it must probably be in my head. Teens have to carry around heavy backpacks filled with books all day. I was probably experiencing muscle aches and was overreacting…
From the time I ws 16 I started having dreams where I was underwater and could not breathe. I felt myself slowly choking until I finally woke up and was able to get a big gush off fresh air into my lungs.
During most the day I was short of breath even though I was not moving. I always felt warm even in winter. When everybody was wearing warm sweaters I was walking around in my tank top.
I went to the doctor several times during the following year. In the end the doctor decided that it was all in my head. I was having anxiety attacks. I was very surprised because I had no feelings of anxiety. I just felt like I could not breathe. All the time…
I was sent to breathing therapy. I got one-on-one coaching on how to breathe, ground myself and relax my mind. I was told to breathe in a bag when I felt like I did not get enough air. Which was a strange suggestion since I felt I could not get enough air all the time. After a year of breathing therapy they decided I was cured. Although I could still not breathe properly…
It is all in your head
At this time I was so used to not being able to breathe in deeply that I hardly noticed anymore. I have been having the drowning dreams and shortness of breath for almost three years now.
When I was 19 years old I went on a holiday to Spain. My breathing started to get worse. I remember sitting on a bus and feeling like the bus was closing in on me. I could not catch my breath! During the day it slowly got worse untill I decided I needed a doctor.
The doctor came to the hotel room and checked me out. He told me all would be fine just take this pill. Turns out he gave me Valium. Because he decided my breathing issues were all in my head. Yet again…
Well, the Valium knocked me out for 2 days. I felt like a drugged up patient in a mental institution. You know the ones you see in movies that are not able to respond, just sit and drool. That was me. I could notice the world around me, but I could not respond to any of it. When I moved it went super slow motion, my muscles did not want to respond the way I wanted them to. I could still not breathe properly.
It’s not in my head?
Upon coming home I decided to take my symptoms to a doctor yet again. By this time I have seen at least 8 different doctors with the same symptoms. This doctor decided to just give me the biggest blood test possible.
Test results came back and it turns out everything looked fine but my thyroid was going a little too fast. Since I was so young, the doctor told me to see a specialist. I called the hospital and asked for an appointment. They asked me if it was urgent. I did not know actually, so I told her how the talk with my doctor went and they decided it was not urgent. I had to wait 4 months for my appointment.
Weird symptom summer
During the summer that I waited for my appointment with the thyroid specialist I started to experience very strange symptoms. The shortness of breath was always there and I was still always very hot. But I also started shaking. Eating soup was not possible, the soup would not stay in the spoon all the way to my mouth. Being 19 I laughed away my problems and patiently waited for my appointment.
One day I was working and my co-worker started laughing and told me I looked like a cartoon. I looked in the mirror and saw that she was right. I looked like a just swallowed a beach ball and it was stuck in my throat sideways. It didn’t hurt and by the end of the day the swelling reduced, so I just waited some more for my appointment.
Finally the day of the specialist appointment came. The doctor called my name and upon laying his eyes on me he said: “I hope they sent you here as an urgent case!” I told him I just waited 4 months.
Before we even went to his office he took me to the cardiac department. I passed very old and grey people attached to IV’s. The doctor walked me straight to an empty room and hooked me onto machines!
Shocked much?! I knew it was not all in my head, even though people kept telling me that. But I did not expect this!
After hooking me to the heart monitor for 10 minutes he decided I was okay and we went to his office to talk.
More tests followed and the diagnosis was Graves’ disease. I had a pretty severe case where my heart was going at three times the normal rate. That was causing my shortness of breath. After listening to my story and realizing how long I have been walking around with these symptoms he told me I was lucky to be alive. A couple more months and I would’ve had a heart attack for sure.
19 years old and 15 pills per day
The medications started and a very difficult 2 years followed. I took 15 pills per day. 1 for my thyroid, 1 for my heart and all the others against the side effects of the first two pills.
I got “cured” of my Graves’ disease and was released from further monitoring. The doctor told me that 20 years in the future my thyroid would probably stop working sufficiently because of the medication I took. He told me not to worry, when that happens you just take 1 pill a day for the rest of your life and you will be fine.
Want to read what happened after this? I wrote that story in another article (click to read).
Because I did not believe my doctors, because I trusted my body and what I felt, because I trusted my own judgement even at this young age I finally got my diagnosis. It was not in my head!
Many people, friends, family, doctors, therapists will tell you it is in your head. Invisible illness is invisible because we can not see. That does not mean it is all in your head. You can not will yourself to be better. Like I could not will myself to breathe. It was not anxiety it was my heart.
Never give up. Be your own advocate and keep fighting!
This article is written by Natalie. You can read her story here.