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DiA (BEAT) ES: GROWiNG UP WiTH A DiSABiLiTY

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Awareness, Health, Inclusivity & Diversity, Mental Health

DiA (BEAT) ES: GROWiNG UP WiTH A DiSABiLiTY

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By Lindsey Montenegro

When I was just two years old, I nearly died. And again, during my first year of college at 18 years old, I could’ve died from the same thing. I’m sure you are probably wondering what happened, so let me just tell you; diabetic ketoacidosis (DKA). If you don’t know what that is, it’s okay, I’ll explain. Diabetic ketoacidosis is when there is a build-up of acidic substances (ketones) in the body, which will cause ridiculously high blood sugar levels in a diabetic, and if left untreated can lead to serious complications such as a coma, or even death. This is the story of my disability.

After falling into a coma for 10 days and my parents fearing for my life, I was diagnosed with Type 1 Diabetes in 2000. This was the first time I experienced DKA, at just two years old. TWO YEARS OLD. Think of a small toddler who can barely form complete sentences, let alone be able to express what they are feeling or understand that their body functions differently. Yeah, that was me. I distinctly remember not understanding why I had to be surrounded by needles all the time. I didn’t understand why the people I loved most, like my mother,  would want to stab me with a needle time and time again, why people would want to hurt me. Little did I realize that people were just trying to care for me, and little did I realize that I was becoming a girl who would be traumatized by a fear of needles, who didn’t understand why she was different than other kids, and who without a clue was developing anxiety, self-esteem and trust issues that would affect me for years to come.

I went all throughout my middle school and high school years, and even my adult years always looking down on my own body because I was always “bigger” than most of the girls around me.

I remember as I grew up and attended school, my mother always told me to tell all my teachers and friends that I could not eat sugar (that was one of her many ways to make me and others understand I had diabetes). I’m not exactly sure how she got it to click in my head at such a young age, but she did. I knew I had to stay away from sweets, I knew I had to always go to the nurse’s office every day before I would eat at lunch time, and I knew that diabetes was something that I had to live with. However, being that young with such a serious illness, I didn’t quite understand how diabetes would affect the way I looked at and treated my body. I’ll admit I had my rebellious moments where I ate whatever I wanted and didn’t care for my diabetes or my body in the way that it needed, because in my eyes that was “normal” and that was the freedom other kids around me had. And I just wanted to fit in. I just wanted to be like everyone else. I went all throughout my middle school and high school years, and even my adult years always looking down on my own body because I was always “bigger” than most of the girls around me. On top of that, growing up in the blooming times of social media, all I ever saw were girls and women who didn’t look like me and how they were being praised as the epitome of beauty in our society. I constantly thought “I’m too fat”, “I need to lose weight”, and in terms of the way I looked, I thought “I am not beautiful”.  In all honesty, I still struggle with these thoughts from time to time, but these thoughts are fairly common among many of us. How sad is that? That we look to society for approval for our appearance, that we look at others in comparison to what we may lack or what we don’t have. How sad is it that we ultimately do these things only to make ourselves unhappy?

I was in denial about the state of my mental health at the time.

 It didn’t occur to me until way later that the mentality of wanting to be like everyone else was not going to work for me. If I’m being honest, it didn’t occur to me to care about my health or treat my body with care until after I experienced DKA yet again. In 2016 during my first year of college, I experienced DKA again after struggling in school, with my health, and just with life in general. I remember just wanting it all to end. I didn’t want to deal with all the financial issues I had going on back home. I didn’t want to deal with the pressures of being a first generation college student. I didn’t want to deal with my diabetes and ultimately, I was in denial about the state of my mental health at the time. I remember one of my endocrinologists, Dr. Anna Sandstrom, would always tell me that one day it would all click for me. That one day I would fully understand and have the motivation and desire to care for my diabetes in the way I needed to. That the way I looked at my diabetes, my body, and even the way my mind thought about these things would change. I never got to personally thank her, but if she ever sees this then– Dr. Sandstrom, all I can say is thank you, you were right! I think it took hitting a very low point in my life to wake up and say “Hey, I need and want to change.”

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I won’t sit here and tell you that since that day everything has been great, because that would be a lie. Nothing is that easy, nor that linear. If I wasn’t dealing with my own personal issues regarding my disability and self, I was figuring out how to live in a country where health insurance is a luxury to anyone that can get it. The U.S is not one of the top countries in the world when it comes to health care, that is known. For years, I personally could not maintain or even had access to stable professional health care or health insurance. Some people can manage to get by without having health insurance, even though that shouldn’t be the case. However, when you have a disability or illness that requires professional medical help or prescribed medicine in order to survive, the lack of availability to health care and resources can be scary. For those out there who are like me, we need our medication in order to just go about our daily life. There’s been moments in my 20+ years of having diabetes where I had little inventory of insulin and did not know where I was going to get my next batch. In the U.S, you cannot get access to insulin without a doctor’s prescription, but if you manage to miraculously find it somehow, it’ll cost you a significant amount of money. It’s unfortunate that America’s healthcare system is based on what makes profit verses caring for the common good of our people/society. One thing I always think about is, “How do you expect me to survive when I can’t even afford to pay for the one thing that literally saves my life?” For me, the answer to that is insulin, but I know there are others out there who can relate to me in their own way.

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After years of figuring out how to maneuver through life with my own disability, I can finally say that I am at a point in my life where I am thriving. I am constantly evolving as a person to live a lifestyle where I am not only happy with who I am, but with how I feel as well. I am probably in the best shape in terms of management when it comes to my diabetes, and I have so many people to thank for helping me along the way. My family, my friends, and my endocrinology team have all made huge impacts in my life, but I also have to thank myself. I feel that we as people do not give ourselves enough credit for being able to get through what we go through in life, no matter how big or small. I still see a lot of space for change and improvement in myself, but in our society too. I would love to see more inclusivity of real-life events, such as disabilities, in the media realm. I would love to see a model on a cover page wearing their insulin pump or continuous glucose monitor while wearing the latest trend, or something like that. I would love to see more entertainers talk about and bring awareness to living with disabilities because I am sure they are out there. I just want to see the REAL. I’ll finish off by saying that the things we deal with in real life, whether it be an “imperfection,” a disability, or any difference that goes against societal norms, that to me is REAL beauty and I hope you feel the same way. Thank you again for taking the time to read my story, and I hope you can relate in some way, shape, or form.

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