The Invisible Disease You Can See
An “invisible disease” is defined as a disease that is not immediately apparent. Although the disease creates a challenge for the person who has it, the reality of it can be difficult for others to recognize or even acknowledge the problem. Outside viewers may not even see it as a problem because they cannot recognize any kind of evidence or display of the symptoms or effects that can impact the individual with the disease.
Type one diabetes is known as one of these invisible diseases. Yes, it’s true that if we were walking down the street and happen to cross paths there is a good chance you wouldn’t be able to tell that I’m a diabetic right away. But, then again… I wouldn’t always walk past someone and know if they had depression, heart disease, or even cancer. Just because we have a mental image of what a person with these diseases, illnesses, and medical conditions would look like does not mean the picture will always look that way.
It’s funny… because when people look at me and find out I’m a type one diabetic one of the most common responses is, “you don’t look out of shape.” And with that comes a backhanded compliment. On one hand (compliment), thank you for not calling me fat or out of shape. On the other hand (backhand), way to go with the stereotyping of what a diabetic looks like.
Looks can be quit deceiving. I would argue that in most cases looks do not get even close to what is actually going on inside, or even outside, a person’s life. Yet, something I’ve lived with over nineteen-years, a disease that requires daily medication and management, is considered to be invisible for others to see. And that part is what baffles me at times.
I wear an insulin pump (no it’s not a pager – although I used to have one when I was an adolescent because I thought it was cool). The insulin pump has tubing that is attached to me close to twenty-four hours a day, seven days a week. The tubing delivers insulin from the pump reservoir to the infusion set. A tiny tube called a cannula is inserted (injected) under my skin that delivers the insulin. This is often in my stomach or sides or many other places. These are all things quite visible.
Sometimes injection sites and med changes don’t work out the best. Sometimes blood comes oozing out right away. Other times it bruises and turns yellow, purple, and even a hint of green. Other times you can notice the spot where the adhesive tape has been for the last 2-3 days (maybe even a few more) keeping the insulin pump attached.
Type one diabetes requires routine blood glucose monitoring. This occurs anywhere between four to six times per day. I have a blood glucose meter, test strips, and lancets in order to test (prick) my sugar levels. All of these medical devices, the blood that comes out of me, the fingers that I use to get the blood, and the marks left over are all visible.
To make my diabetes even more noticeable is the Road ID bracelet I wear that says I’m a type one diabetic who has an insulin pump. Right now it’s the color blue (representing), but I also have it in five other colors. But, look at my wrist and it’s pretty apparent. Also, I love rocking some of the type one diabetic gear from some of the best supporters like Insulin Dependent Apparel, Breaking Diabetes, Type One Strong, and Overcome Typ 1. I wear the t-shirts, winter hats, and sweatshirts, sip delicious coffee out of a nice cup, and drink refreshing water out of a nice bottle. The words “diabetic” or “diabetes” are quite bold, so if I am using any of those items or wearing the clothing it will be difficult not to see it.
I also read books about diabetes (and have written one myself). From fellow diabetic authors like Lauren Kronen (Too Sweet: The Not-So-Serious Side to Diabetes), Sierra Sandison (Sugar Linings: Finding the Bright Side of Type 1 Diabetes), and Erin Spineto (Islands and Insulin: A Diabetic Sailor’s Memoir)… all of us has made our diabetes more visible by writing our stories and sharing them for others to read. And when reading a book, why not pair it up with a nice glass of wine – particular the one by Delaney Blue Wine which boldly represents its mission to raise funds for life-changing research. You can definitely see this signature bottle.
Frustrating to think that something I’ve lived with for the majority of my life is considered to be “invisible” to others. This is not the first time I’ve had these thoughts regarding how type one diabetes, and other diseases, are looked at as being invisible. However, something did happen recently that changed my perspective entirely.
The other day I was changing the infusion set and it did not go well at all. Shortly after the bruising, swelling, and blood appeared on my stomach. It was a pretty bad one. I was immediately met with frustration, anger, irritation, annoyance, and even a glimpse of disbelief. These are emotions you get used to when managing type one diabetes.
After getting through it and finding a new successful spot I started to have thoughts about the now noticeable bruising on my stomach. I had thoughts like: “I’m glad I can hide this.” “Hopefully no one wants to go by the pool or something so I don’t have to take my shirt off.” “I wonder what people are going to think when I change my shirt before working out in the locker room.” “This looks ugly and I hope it will go away soon before someone notices.” And BOOM… light bulb moment occurred.
I realized where I played a role in making my disease partly invisible to others. The embarrassment, fear of being judged, or wondering what people would be thinking has led me to intentionally prevent people from being able to see the disease I live with every single day. I blame others for not seeing it and yet don’t recognize my own part in keeping things about it secret.
An important lesson learned – – because without it being seen it becomes even more difficult to manage the physical, psychological, and emotional aspects of living with a disease. We need others to see what we go through. Whether it be family, close friends, doctors, support peers, or even strangers who don’t understand enough about it because we haven’t shown them. Communities, organizations, and even larger places need to see so they can make changes when it comes to medicine, technology, and even health coverage.
From here on out I will try more to be less afraid and let others see the invisible disease I live with.