Tag Archives: education

Do you keep diabetes a secret?

Diabetes, as we all know, can’t be seen on a person. But wouldn’t it be cool if people with diabetes suddenly had purple eyes or lighting bolt shapes in their hair? It’d be even better if we developed some sort of superpower. I guess you can say, our superpower is the ability to manage our lives, to supercede any doubt, to live everyday like it’s our last because just about 50 years ago, it might have been. Thanks to modern medicine and technology, we’re able to live with diabetes for 50, 60, 75 plus years without question.

No, you can’t see diabetes. You can see actions though. You can watch someone check their blood sugar, take an insulin shot, swallow a pill, mentally count their carbs, program their pump to deliver a scheduled bolus and even adjust a basal rate. But seeing it, no. You can’t see beta cells being attacked, unless under a microscope and even then– I have no idea if that’s possible.

Unless someone sees my pump, they really don’t know that I have diabetes. We’ve been in that situation before– you know, when people think my pump is a pager or something of the like? I hate to break their heart when I tell them, no, I’m not a doctor.

A few years back, when I initially thought about writing this blog post, I read something that asked the question, “Where do you hide your pump?” I then proceeded to read comments that dissected the question and said things like, “I don’t hide it. I’m not ashamed.” Fair assessment. I never thought about “hiding” my pump either. But was that something I was doing when I strapped a band around my leg to clip the pump so that you couldn’t see I had it on when I wore a dress? Was that what I was doing when I clipped it to my bra so that I looked like Iron Man? Was the fact that I was trying to disguise it or camouflage it under or between something else actually “hiding”?

I then thought about the stories of people who hid the fact that they had diabetes on purpose. They thought they were a liability to their job. They were ashamed for not taking care of themselves (to an extent). They didn’t want to be different from their peers. They didn’t want anyone thinking they were different or were incapable of doing something.

I suppose that it is a choice to “come out.” There is a choice in talking about it all the time, in joining our online communities, in educating other people, even if it’s correcting the term “diabetic” to “people with diabetes.” We’re not defined by our inability to make insulin, but by the ability to supercede it and conquer the world through gifts we’ve been given by science and technology.

I guess I could choose to keep diabetes out of the conversation, but it’s created such a strong person through acceptance. I see so many strong people who discuss, bring to light and fight through issues that we all go through because we don’t make one measly little hormone. It’s such a tiny thing that has such a huge impact, and I’ve said it before.

Diabetes has given me the ability to believe in myself, it’s given me the voice to speak, it’s given me the drive to help. Diabetes has made me develop into the person that I am, although it doesn’t define who I am or will be. It’s helped to make me confident and knowledgeable. It’s tied into the rest of my communal beliefs and has only made me a more well-rounded person with abilities to lead, write, organize and make people understand.

Have I kept diabetes a secret? No. Have I hid my pump for fashion’s sake? Yes. But what you gonna do? I don’t think I’ll ever keep diabetes out of the equation. I don’t think you should either. Be proud. You’ve come this far and you have so much more to go.

 

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My Diabetes Advocacy

I reread an interview I did a few years ago during National Diabetes Awareness Month aka November. Although I felt that it could have been a bit more concise and articulate, it made me think about what I said and how I said it. If you take a look at it, I go into a lot of specifics and thought processes of my own. Incidentally, it made me think about my diabetes advocacy and quite frankly, where it went.

Yeah, I’m a busy person. I have about 10 jobs and most of the time my friends think I have no time for them, but letting my advocacy slip is like letting my health go. I feel like it goes hand-in-hand. One cannot exist without the other. And I started to wonder, was I burning out again without knowing it?

It’s possible to avoid your health by making yourself too busy. People do it all the time. They’re too busy to work out, too consumed by other things to eat better or monitor their lifestyle. Could I be doing the same thing when it came to taking care of myself and just hadn’t realized it? Was I using my work and my extracurricular activities to bury the fact that I wanted to forget I had diabetes… again?

Truth be told, I haven’t had insurance since I was laid off my last full-time job. I just started a new position where I’ll have it again, but knowing there were inhibitors to caring for myself made me almost wish I didn’t have diabetes. I still checked myself and worked out and ate all right, but the idea of having to re-order pump supplies and having to go to the clinic instead of my world-renowned endocrinologist scared me. I was in this position again for wanting to work for myself and be on my own a bit. I was also unaware of this new insurance marketplace but at the same time was set on the fact that I would find a job when I needed it, which I did.

However, when it came to my presence on social media and out in the public sphere, I found that I was lacking. I didn’t blog very much. My posts about #BlueFridays had gone to shit and my @Kikisbetes Twitter feed wasn’t very active. Hell, my profile picture on the account doesn’t even look like me anymore. But now as I reflect on the past six months, I realize that I haven’t let my advocacy die. My social media advocacy, might have been impaired for a while, but not my roots for the work I was actually doing. It just goes to show the world we live in. More importantly, the world I live in– if you’re not on social, you don’t exist.

During November 2015 I made an offer to a nonprofit from the Brighton Park neighborhood here in Chicago to speak to groups about diabetes for free. I thought, “Why not get out there, meet people in the community and spread some diabetes awareness?” I wasn’t working regular hours and had time during the day to dedicate to hear myself talk about something I was a supposed expert in. Not an expert– just blessed by autoimmunity.

Needless to say, they took me up on the offer. I was able to speak to a group of mentors who worked with parents and their children. I was there to let them know about diabetes awareness, symptoms and preventative measures. A few months later, I spoke to a group of teen moms about what to look out for in their little ones, the importance of taking care of themselves while pregnant and why nutrition is of utmost importance to learn and be aware of.

The flame burns eternally inside me to work and advocate for those who may have or have diabetes, including myself. It’s in my head all the time and every chance I get, I talk about what I know, what I’ve learned, what I can do better and how we can help others educate themselves on having this disease (or disorder, in my eyes, if you’re Type 2).  Learning that others have issues makes me want to work harder for them and myself, making sure that I don’t let my health slip.

In the end, I’m still here. I may not take a picture of myself for #BlueFridays and may only sporadically Tweet about my drops and low blood sugar levels, but know that I’m doing whatever it is that I can to help those around me in their battles with diabetes. My diabetes advocacy will never die.

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