Insulea - Mein Leben mit chronischen Erkrankungen

Ein Blog über meinen Alltag mit Diabetes Typ 1, Asthma, POTS und Endometriose.

ENG: American Doctors ruined my life - my (Mis)Diagnosis Story

Not long after my 17th Birthday my life has changed forever. I was an exchange student in the States back then and so excited that my dream of an exchange year finally came true. I loved being with my host family, experiencing a new culture and education system and meeting new friends. I was tired a lot, but I thought it’s because of all the new exciting things that were happening around me. It was a lot to take in! I felt so so exhausted most of the time and didn’t really understand how the other students were able to join social clubs or sports after school. I was too tired for that.
I wasn’t feeling my best while the orientation camp in New York prior to the exchange as well but I didn’t really think about it .
When I look back now I realize that there was a lot of signs I didn’t know how to construe but I do know now how to put those pieces together.

It all started with me feeling dizzy and the feeling to be trapped inside a huge bubble. I felt like I wasn’t part of my body anymore, as I would look down on it doing things. I couldn’t quite handle those odd feelings and so I often panicked. I didn’t know at that time that I was having panic attacks. I couldn’t breathe, my vision got blurred or would go completely dark, I was shaky and dizzy. I thought I’d go insane. I thought I’d die.

I was so anxious that it was just me making those things up in my mind, that I’d actually go crazy — so I didn’t seek help right away. After all I didn’t even know how to explain those feelings I’ve experienced.
Then I got sick with the flu and went to the doctors. I explained all my symptoms and they said it’s just the flu and I would feel better soon. I wanted to believe them. I took my medicine, but it only got worse. Sometimes I would find myself sitting on my bed not knowing what I did the past three hours. I just couldn’t remember anymore. I felt so lost and alone and scared. Even though my host family was there for me I was far away from home and my friends. I was so scared to never make it home again, that I was seriously ill and would die in the States. I was even too scared to go to bed at night because I thought I might not wake up the next morning. I was devastated.

Was my mind playing tricks on me?
As my illness continued the doctors got worried and I got a lot of blood tests done. I don’t know what they were looking for because checking for my blood glucose levels would have saved me from going through more physical and mental pain.
They came to the unfortunate conclusion that I wasn’t really sick but that it’s my mind playing tricks on me, that I’m home sick or it’s the cultural difference I couldn’t cope with. Back then I didn’t know what else to do than to believe them. I was a scared seventeen-year-old girl and they were the experts. Experts that ruined my life as I knew it.

Of course, it only got worse after that. I got weaker and thinner every day. Everyone noticed, and my host mom really tried to help me but didn’t know what to do. She ordered me nutrition shakes from the store and in some way those really helped me.
I was sick in bed that day — too weak to go to school and actually too dizzy to even leave the bed and go to the bathroom. I drank one of those carb-loaded shakes. After a while the room started spinning and I couldn’t focus my eyes to one point anymore. I couldn’t breathe. My host mom rushed me to the emergency room in the local hospital and they finally tested my blood glucose level which was around 500mg/dL at that time. I had to breathe into a paper bag and they ran some tests on me.

It's not Type 1 Diabetes?!
The journey to my diagnosis didn’t stop here though. I was told it’s unlikely that a young girl my age gets diagnosed with Diabetes Type 1 and that I just need a basal insulin for now because my blood glucose levels weren’t high enough for rapid insulin yet. Everyone who is familiar with T1D knows that this was absolutely insane. But how should I have known that? So they gave me my first Lantus pens and showed me how to use them. That was it. No hospitalization nor a workshop on what diabetes is and how to handle it. Oh, Wait! Also, they told me I should stop eating carbs and sugars. I also had to measure my blood glucose levels every two hours and keep track on that.
What can I say: Lantus Insulin and no carbs at all are not the best combination. I was low all the time and after two weeks I felt so weak and blurry in my brain that we went to see the doctors again. Well, they then told me that I couldn’t have Diabetes Type 1 with those low blood glucose levels.

At that time I couldn’t really participate in daily life anymore. I would nearly pass out a few times a day and spent more time in the sick room than in the class rooms at school. I had a lot of panic attacks even though I didn’t know how to call them at that time. I still remember sitting on the floor in my room bawling my eyes out because I felt so alone and helpless. I couldn’t bear it anymore. I cried for hours. It was a hard decision to give up on my dream of an exchange year but I knew it couldn’t go on that way. So I decided to go home. 
It wasn’t that easy to convince my parents at first because I didn’t tell them how serious it was before. I didn’t want them to worry. But I knew that I had a chronic condition that can be life threatening if I don’t get the needed treatment. They talked to some german diabetes doctors and they were really alarmed by my condition. My mom told me they called one night and told them to get me home immediately.

At that point, I was too weak to even stand up in the shower alone.
I didn’t know how to get home alone. My exchange organization got me a wheelchair service that would bring me from plane to plane because I was too weak to walk on my own. I went home on Christmas morning and got hospitalized for two weeks after Christmas. I got my treatment and a workshop on how to handle diabetes. The nurses and doctors at home did a really good job on teaching me everything I needed to know about Diabetes.

My Mental Health Situation
Unfortunately, this was only the beginning. My mental health suffered from those three months of an untreated chronic condition. I developed an anxiety disorder. I had up to 10 panic attacks a day and at first I didn’t know what triggered them. Most of the time it was due to crowded places, open places or places that reminded my body of the hospital situation and low blood sugar levels.

It got so bad that I was too afraid to leave the house. I forced myself on walks with my mom and my aunt in the woods next to our house, but I panicked every time and nearly passed out most of the times too. I couldn’t go to school or to the city or meet up with my friends. I even panicked driving in the car or the bus.
I was so annoyed with myself for letting my mind control me and so exhausted from trying to fight against it every day. I got depressed because I was too weak to live a normal life and I wasn’t able to do and enjoy what all my friends were doing.
Eventually I made the decision to get hospitalized for two months into a psychosomatic clinic to work on my anxiety disorder.

Three years of my life: gone
It took me three years to fight those daily panic attacks and my fear of low blood sugar levels. When I graduated in 2014 I was definitely feeling better but it was still far from the life I live now.
The diagnosis and my mental health issues touched my life in so many ways that I could go on writing about this for days. For example: I had no endurance left to walk for long. I had to rebuild my strength for years. Up until last year, I was afraid to stress my body too much so I would rather miss out on things I really wanted to do than put a strain on my body. I was living my life and I did a lot of great things; constantly improving. But I still had a lot of limits I was too afraid to step on.

Seven years later: Finally feeling alive
This changed last year. I don’t know what it was that made me challenge my limits again. Maybe it was the constant improvement, or it was the fact that I was able to really monitor my blood glucose levels with my new CGM sensor.
Whatever it was, it makes me feel more alive again. I still have my struggles and challenges I didn’t take but today I’m brave enough to at least try to conquer my limits.
SEVEN years are such a long time and when I look back there are so many goals that I’ve reached already. Things I never thought I’d be able to do again. I’m so proud of my accomplishments.

Struggles in 2018
Still — Healing isn’t linear. By the beginning of 2018, I was on a great high just by feeling so alive again. But in March my grandpa passed away from cancer and it hit me really hard. My Grandpa and I had a special connection. He was my greatest supporter, my best friend and the person I loved most. I knew whatever struggle I’ve faced or whatever mistake I’ve made, he would still think that I’m the best human being there is and for me it was the same way around. So from now on a piece of me is missing and it’s been hard to feel something but emptiness the minute I’m alone lately. I questioned my whole life and what I want for my future. I currently don’t know but I stopped stressing about it and I started to just embrace whatever feelings I have. It’s still a journey to go but I try my best every day.

I just wanted to add that because mental health is so important and so diverse and I guess most of the people didn’t even know what I was going through at that time (or that I’m going through a hard time right now). Because you couldn’t exactly see that I was struggling. You could get to the conclusion because of my behavior and actions at that time. I’m glad that even though my behavior might have looked odd to others no one called me out. Everyone at least acted really understanding.

So to anyone who is reading this: Be kind to one another. You never know what the person next to you might go through.