When I was 17, my life changed forever. I was an exchange student in the United States and was happy that the first exciting months were over and I could finally start settling in. I found great friends in the other two exchange students and a girls group in High School. I felt at home and loved by my guest family, and still have a great relationship with them today.
It was a pretty great environment I found myself in, a perfect story for the high-school year I’d always dreamed about. Unfortunately, this dream of mine turned into a nightmare when I was eventually diagnosed with Type 1 Diabetes.
Let me start from the beginning…
Everything got worse after my 17th Birthday.
Despite being lucky enough to have found a great host family, high-school and friends, I still felt constantly unwell, but I couldn’t explain the feeling. I was always super exhausted and needed a lot of sleep, I felt dizzy most of the time and lost a lot of weight. At first we all thought that these were just the side effects of me adapting to my new life. We also assumed these symptoms would just go away at some point. Instead, they got worse. A little after my 17th Birthday I would almost pass out daily, I was sick and had to stay home or needed to get picked up from school by my host mom.
We went to the doctor’s of course but all they did was prescribe me meds for the flu my body had supposedly caught. These meds were supposed to help me sleep better but they made me have mental blackouts instead, I ended up zoning out with no recollection of what happened in the last few hours.
The doctors said it was just homesickness.
The ultimative turning point for me came when I realized that it wasn’t just adapting or the flu, it was something serious. My mind created a lot of awful scenarios that I don’t want to share. Let me just say that I was a desperate 17-year-old girl, anxious about dying in the US, far away from her home and loved ones in Germany. Well the doctors didn’t help to set my mind right, suggesting it was homesickness and that I had made my symptoms up. Naturally I became scared of talking about my symptoms and feelings. I never told my parents at home how serious this all was, I didn’t want them to worry.
Around this time was when I first encountered my developed anxiety disorder. I didn’t know back then that the feelings I was experiencing were panic attacks, caused by my undiagnosed diabetes.This was my body’s way of trying to fight back.
The misdiagnosis cost me my exchange year but luckily not my life.
It took the doctors two months to finally diagnose me with Type 1 Diabetes. Despite this diagnosis, I never got instructions or a workshop on how to handle the chronic condition I would have for the rest of my life. Worse, I didn’t even get fast-acting insulin, because apparently they weren’t sure whether I really had Diabetes, because I was “too old” already and secondly, my blood sugar was mostly low (because I was simply instructed to inject a certain amount of basal insulin without checking my factors first).
I was also told to only eat low carb. I think everyone who is familiar with Diabetes can understand how I felt. I was relieved to have finally received a diagnosis, but without fast-acting insulin and a mostly low carb diet, I got even worse. I decided to fly back home to Germany around Christmas. I needed a wheelchair-service and assistance at the airports as I was too weak to walk on my own.
In order to talk about my mental health I needed to tell my story.
In order to talk about my mental health I needed to tell that story, so everyone can understand how I developed an anxiety disorder and depression. I went from being a happy, care-free young girl to a sorrowful girl who needed to grow up fast to fight her demons. I went straight from the airport into the hospital and finally got all the support I needed to start a happy life with diabetes.
Unfortunately, my mental health struggles were not over. My anxiety was triggered by the smallest things like bright lights that reminded me of the time in hospital, and also by all things diabetes related, especially hypos.
Actually, the symptoms of my anxiety attacks reminded me of those of a hypo and vice versa - shaky hands, vivid colors, dizziness. It got so bad that I couldn’t leave the house anymore as my anxiety attacks were so frequent, especially outdoors and in crowds. I also had to deal with attacks when my blood sugar was dropping or rising too fast. I spent two months in a psychosomatic facility and another three years in therapy to overcome those frequent attacks. Eventually, I learned how to cope with my fears.
Therapy helped me get better.
Even today, 9 years later and 6 years without a full-grown anxiety attack, there are still situations in which I feel anxiety kicking in. But now, thanks to therapy, I know how to handle it. I do have some tips for mental health struggles but first and foremost, I suggest getting professional help when things start to feel too overwhelming. We often find ourselves in situations when we keep telling ourselves that it “isn’t that bad'' and “others need it more.” We try so hard to not let diabetes rule our lives - but: all feelings and struggles are valid. Waiting until it gets unbearable doesn’t help anyone, it only makes it harder to recover.
How I cope with diabetes & my mental health now.
Talking about this painful past of mine always makes me realize how far I have come and how proud I am of myself. Still, the thing with mental health problems is that they kind of act like a chronic condition as well.They might be out of sight for a time, but they don’t disappear for good. I still have days where I don’t feel my best - and I try not to say “bad mental health day”, because labelling it a bad day makes it worse.
Instead, I try to make my day as pleasant as it can be. I do things I enjoy like cooking, reading and sometimes cuddle up in bed and watch a show on netflix. Prioritizing my mental health is not always easy in our modern world and sometimes you can’t just stay home and take it slow.
In situations like this, I try to call someone for a chat, take a walk in my lunch break or get myself a chocolate bar (that always helps me personally). When it comes to my diabetes management I try to do everything I can to stay in the range I feel comfortable with but I allow myself a little room for maneuver. It’s okay to have a smaller time in range when you don’t feel your best, don’t beat yourself up about it.
When diabetes affects my mental health.
Sometimes it’s the other way around and my mental health gets triggered by diabetes. We all know those days where it feels impossible to stay in range despite us doing everything we could. Most of the time it’s rather the circumstances than mistakes we've made.
A good example would be my decreased insulin sensitivity around the time of ovulation - I can’t change the impact menstrual hormones have on my body and thus all I can do is to increase my basal rate and bolus factors. Sometimes it works out, sometimes it just doesn’t and that’s okay too. It’s the same with carb estimating in my opinion - I used to beat myself up when I guessed incorrectly and my blood sugar was all over the place. But did it help? No, of course not, it made me feel guilty and sad and my blood sugar was still not in range. I say it over and over again, but we have to stop thinking in the categories of “good” and “bad” when it comes to Diabetes Management. There is no good or bad PWD and Diabetes is not all we are.
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