Ever since I was six-years-old I have had Type 1 Juvenile Diabetes.
1987 was the year that changed my life.
At that age, I found out that people can be unkind and say harsh things. Different than the song sung in the schoolyard, “sticks and stones make break my bones, but names will never hurt me.”
How I wish that was true. Even at age 33 I wish that was true.
I have been used to having extra attention since I was six—unwanted attention due to having a chronic illness. Back in 1987, “diabetes” was not a common word, just as testing my blood sugar was not as common as it is today.
The difference is I have Type 1 diabetes: only five percent of the population with diabetes has it. This doesn’t mean I have the “bad type.” It means my pancreas stopped working at age six. It has nothing do with lifestyle or weight, as Type 2 diabetes does.
The only similarity between Type 1 and Type 2 Diabetes is that the same complications can occur. I didn’t have an option to take pills or alter my lifestyle to make my diabetes go away. I took four insulin injections every day from age six to age 17, when I went on an insulin pump.
Diabetes is part of who I am. I honestly can’t remember life before it. I can’t remember a day when I didn’t wake up and test my blood sugar, first thing. I can’t say it defines who I am, but I can say it has changed who I am forever, as have the past years of surgery.
All these years later I can still remember the nasty comments people have made to me, snide remarks or ignorant comments about my insulin pump. I have heard even worse comments about my weight.
Sticks and stones may not break my bones but names do hurt. I am used to random comments and have found my way of dealing with them.
Yes, I am thin, too thin—all my bones show. But I don’t need anyone to tell me that.
Do people think that when I look in the mirror and see my bones protruding, it appears attractive to me?
No, I am not anorexic. Yes, I eat. But when I am leaving the gym and hear, “Wow, you shouldn’t be here, you should be eating a burger,” it hurts. Even at 33 it hurts.
I am the healthiest I’ve been in the past eight years, all 85 pounds of me. I can’t just eat a burger and I didn’t just spend four hours at the gym.
I am just like others except my “normal” is different.
I want to work out to gain strength, have stress relief and feel strong. I want to eat and I do—after four years of living off feeding tubes, I am finally able to eat food, digest it and not suffer pain.
But I can eat only four ounces at once and cannot take a sip of water during eating. After I eat my four ounces of food I have to wait 30 to 60 minutes before I can have a drink and three hours before I can eat another four ounces, depending on what I have already eaten. And there are many restrictions.
But I am just like everyone else. I do not want comments that hurt and pierce my skin. I am just working toward rebuilding myself, my mind and my body.
I have enough of my own insecurities about my body, all that it has gone through, is still going through and will continue to go through. I used to have long, thick hair and after having two surgeries within three months of each other this year, my hair completely fell out.
Maybe that doesn’t seem like a big deal, but it is. I have many scars from surgeries and feeding tubes. But the scars that hurt most are the words.
I am slowly learning how to love my scars, my physical scars, knowing that they are a symbol of my will to survive when everyone told me I would not survive. I will continue to survive and thrive. Maybe my hair will grow back in time—maybe it won’t. Maybe my scars will fade, maybe they won’t.
But hair or no hair, deep scars or faded scars, it is our connections that bring us together. This is my normal, figuring it out day by day. Just trying to live and not be consumed by health-related stuff.
So please let me live, let me deal with my medical issues on my terms, and when you see a really thin person or a heavy person, or a white person or a purple person, let them be all that they are.
Author: Kerry McQuade
Editor: David Lewis & Ashleigh Hitchcock
Image: courtesy of the author