There’s a lot of things about Type one Diabetes that nobody knows. Things that nobody talks about. Things that nobody understands.
There's a lot of things about Type One Diabetes that nobody acknowledges. Things that nobody realizes. Things that nobody thinks about.
It's difficult to educate people when the media doesn't describe the difference between Type One and Type Two Diabetes and simply associates the generic terms with words like "too much sugar," "people who are overweight" and "catch it before it's too late." It's difficult to explain that there's no cure, when TV commercials advertise new technology that will "fix" you so you don't have to prick your fingers anymore. It's difficult to express the paradox that is within my heart, for I am in a constant internal battle of reminding myself life could be worse, but also considering the number of needles, the amount of exhaustion and the amount of effort that goes into living every single day for the rest of my life.
November is National Diabetes Month which is actually pretty ironic because November is also the month I was born and the month I was diagnosed with Type One Diabetes. This November, I turned 20 years old and will have had diabetes for 10 years; exactly half of my life. I created my own T1D footprint on JDRF.org, and I was shocked that I have had this disease for over 3,000 days and I have pricked my finger almost 22,000 times. This is what people forget. This is what people need to see. According to The Juvenile Diabetes Research Foundation, “T1D looks like the 1.25 million Americans living with this disease and the 5 million who are expected to have it by 2050 if we don’t do something now.” - JDRF
Some people may notice that I drink juice when I'm low or take insulin when I'm high, but they don't know why I do this. They watch me prick my finger, but can't associate any significance with the number on the screen. They know I could pass out when I'm at one extreme or another, but they wouldn't know how to recognize the symptoms of hypoglycemia without me telling them.
I live my life in a way where people don't feel bad for me and that's the way I like it. I don't know how to respond the looks of pity, the words of sympathy and the encouragement speeches about how "at least it's not cancer." I don't like that attention. This is part of the problem, though, since I choose not to victimize myself: people tend to downplay the significance of Type One Diabetes which can be extremely frustrating.
Yes, you're right, diabetes isn't cancer but you know what? There's still no cure and it's hard to accept that your life will never go back to the way it was before. Yes, I can eat whatever I want as long as I count the carbs but you know what? I am attached to a little machine that distributes liquid into my body that I will need for the rest of my life. Yes, I can still walk and run and laugh and play and sing and dance and go to the movies and go to the mall and fly across the country and play a sport and succeed in school and do everything a "normal" person can do, but you don't know what it's like to live a normal life with an invisible disease.
You don't know what it's like to live a normal life with an invisible disease.
You don't know what it's like to be so desperate for sleep but you must force those peanut butter crackers down your throat at 4 in the morning. You don't know what it's like to be super anxious about everything you do and everything you eat after going to the gym because you know your blood sugar is going to spike up before dropping low, perhaps several times in the next 12 hours. You don't know what it's like to be so thirsty and I mean so painfully thirsty- that you drink enough water to make your stomach hurt and then spend the next four hours testing for keynotes in the bathroom until your blood sugar is back down.
You don't know what it's like to live a normal life with an invisible disease.
You don't know what it's like to hear incorrect assumptions about people with diabetes, knowing it's not even worth it to argue. You don't know what it's like to do everything you possibly can to prevent a complication, just to have the disease do the exact opposite of what you want it to, at the most inconvenient time imaginable. You don't know what it's like to hear people complaining about having to get shots once a year at the doctor's, or to listen to things like "I don't know how you're able to do that to yourself."
It's not easy piercing a needle into your finger and squeezing out a droplet of blood several times a day. It's not easy to mentally prepare the tender skin of your stomach to take the pain of the infusion set, knowing the sting might not go away if you hit a nerve. It's not easy to be aware of the financial burden it causes your family and to be constantly told your prescription is not ready to be filled when you need your insulin to survive day to day. It's not easy being analyzed by your Endocrinologist every three months because even though you're doing the best you can, the numbers don't always show it.
Most importantly, though, It's not easy feeling the things I feel and not being able to find a single person in the world who can understand the paradox of Type One Diabetes. I want people to know that I can do this while also acknowledging how much it sucks. I want people to believe in me while also accepting that there will be moments of weakness. I want people to treat me normally while also recognizing the levels of emotional exhaustion that come from doing any activity that could affect my blood sugar. I want people to see my invisible disease for what it is: a true test of strength, a chaotic roller coaster of determination and an admirable marble of intense bravery. It's National Diabetes Month; go tell a Type One Diabetic that you are listening, that you are here and that you love them.