Guest Post: “Living Every day With A Smile On My Face”
Before I was 12 years old I really had no idea what diabetes was. I knew it was illness, but all I thought it meant was that you couldn’t eat sugar whatsoever. Right after I turned 12 years old, I was diagnosed with diabetes type 1.
I don’t think there are words to describe the experience that I went through when I was admitted to the hospital due to my glucose being over 1000. For a whole week, I met with 10 different doctors on a daily basis and they would all try to explain to me what diabetes was.
Even with all of their explanations, I was completely lost in what it meant to have diabetes. They told me I had to inject myself for the rest of my life - which I didn’t understand why or how I would do so - and that since that day I would have to completely change my lifestyle.
Imagine being 12 years and having people tell you that everything that is normal to you must change and that you have to incorporate new, painful, routines into your daily lifestyle (checking you glucose, injecting insulin). Actually no, scratch that. Imagine being whatever age and having people tell you that! If I thought that being diagnosed with diabetes after only a week was challenging, I honestly didn’t know the definition of challenging at that point.
Throughout my journey with diabetes everyone around me has been incredibly supportive. In school, at home, in other activities, etc. people were constantly keeping an eye on me making sure that I was handling everything as best as I could.
I never had a hard time telling people I was diabetic because it was a huge part of me but I did have a hard time understanding that when people would find out I was diabetic their initial reactions was pity for me because I was “such a young and healthy girl” or the fact that people blamed me, and I guess the lifestyle I had before I was diagnosed with diabetes, as the reason why I got diabetes. It was so hard to hear for so many years that I “must of been fat as a child” or that I “must have loved candy as a child” when those things aren’t even relevant when one is diagnosed with diabetes type 1.
As I got older, living with diabetes got more and more difficult just because everything that I did or didn’t do would somehow end up affecting my diabetes and how I felt.
If I was stressed from school or my personal life my glucose levels would go on a roller coaster ride. For a period during high school, I fell into a routine of being hospitalized at least once a month due to a DKA.
People generally attributed me to being extremely unhealthy when in reality I just didn’t know what I was doing. I had gone to see all my doctors, diabetes educators, meetings and support groups of people living with diabetes and anything else that you can imagine but all that I learned and got from all of that was that everything I was doing was wrong. I got bitter after while because I internally judged people that tried helping me because I thought that they would never know what I was going through.
Sure, they had studied that specific illness, and others, for many years but really, did they know what it felt like to wake up at 2am with your sugar below 40? Did they know what it felt like to faint out of no where and have to depend on others, even strangers, to care for your life and call an ambulance? Did they know what it felt like to go to the ER because of a DKA and have to be admitted to the ICU and have the doctors give me too much insulin resulting in me fainting because my sugar dropped to 18? No, they didn’t. They just knew what they studied, I knew what I had lived and what I had felt.
I thought it was so different to study something rather than actually having to go through it. You can read about how certain disease affect your life or the side effects that they will have on a person but I didn’t believe someone could really understand something without having to live it.
It took me a long time to stop having those harsh and somewhat immature judgments of others that were just trying to help me and to understand that they genuinely just wanted what was best for me.
When I was about 17 years old I started to frequently faint without my sugar being low or high. I had notice some changes in my body and the way I was feeling but I always attributed anything that I felt to my diabetes so I didn’t think much of it but since the fainting episodes were becoming too regular I had to go get blood work done to see if there was something else that was causing it. After weeks of medical exams I was diagnosed with Addison’s disease. Addison’s disease is a rare condition in which your adrenal glands do not produce enough steroid hormones (cortisol and possibly aldosterone).
This meant that for the rest of my life I would, apart from injecting insulin and pricking my finger, have to take medications to make up for the hormones that my body doesn’t produce. If that wasn’t enough, a year after that I was diagnosed with Hashimoto (yes it sounds like a sushi roll) which is a condition in which your immune system attacks your thyroid gland - which produces hormones that coordinate many of the body’s activities. I couldn’t believe it I mean when did I sign up for the endocrine failure lottery?! Turns out I actually had something called “Polyglandular Autoimmune Syndrome type II” (or “Schmidt syndrome”) which refers to the combination of diabetes type 1, Addison’s disease and Hashimoto.
What all of those medical terms basically mean is that my body’s antibodies attacked those endocrine system organs and therefore stopped working and since then I have to be the one that regulates all the hormones (by taking medications) that those specific organs stopped producing.
I can’t even begin to tell you how hard it has been, and still is, to try to regulate my body at all times so I never give myself too little or too many hormones (insulin, steroids for Addison’s disease etc.) in order to feel okay every day. It’s so horrible to feel weak out of no where throughout your day and not knowing which disease is the one responsible for my body reacting that way.
It’s so horrible to feel weak out of nowhere throughout your day and not knowing which disease is the one responsible for my body reacting that way.
Apart from that, everything and anything affects all of them so heavily that it gets really difficult to maintain a regular lifestyle. Even if I am a little bit stressed from having finals, having a little bit of anxiety, trying to adjust to things that happen in my life or honestly anything that a normal person goes through in their life is so challenging because if something becomes too difficult for me to deal with, apart from it being difficult on its own, all of my illnesses start acting up and make everything so much worse.
I’m 22 years old now, studying psychology at a university in Miami and being completely honest, the journey hasn’t gotten easier for me. I’ve just had to accept the fact that those 3 illnesses are a part of me and they will be for the rest of my life so I might as well befriend them and treat them nicely otherwise they will do nothing but make things more complicated.
I can’t say that I am a perfect example of someone who handles these illnesses perfectly but I can say that I will never give up on myself because even after everything I’ve endured for the past 10 years, I’m still here, living every day as it is presented to me, with a smile on my face and hope that one day there will be a cure for all of them so no one ever has to go through this.
I’m optimistic about my future and I do hope that I learn to better manage all of this and everything that comes my way. Life itself isn’t easy so when you have a little bit of medical baggage it can surely make things shaky (pun intended for when my sugar drops) but it’s important to never give up. After all, we only have one life, with or without medical baggage.
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