This past November during Diabetes Awareness Month, a campaign was started by JDRF with photos in blue of T1Ds that said, “T1D Looks Like Me.”
When the campaign first appeared, I loved it. I saw all of these photos all over Facebook of children and adults with T1D that showed strong, beautiful people living their lives. I had pride in who we are as a community, because we are strong, beautiful people.
After a couple of days, I started looking at the photos more closely. I noticed that there were not any photos of people in the hospital suffering from DKA. I noticed that very few showed injections or pump infusion sets on the body of the diabetic. I also didn’t see the stress of families trying to figure out how to afford the medications, pump supplies, or doctor/hospital bills and labwork.
In short, I saw healthy looking people, not missing a beat. I did not see Type One Diabetes.
Then, I realized that there was equally good and bad results from this campaign. The good results came in the pride among the T1Ds and our families that we somehow persevere with this disease. It united US. The bad, however, is that it made it look like T1D was not only NOT a dangerous disease that threatens our lives everyday, but was actually no big deal.
So, it made me think deeper about where we went wrong and how, in general, public awareness campaigns do not actually raise awareness about the diseases they are meant to represent. Breast cancer awareness rarely shows how women lose their breasts, endure radiation and chemotherapy. Instead, it is a sea of pink. It is about loving those that have it, but not really understanding what the disease is, or how to defeat it.
We launched a similar campaign last year, which spread further than I had ever seen a T1D campaign go.
But that is not where the shortcomings appeared. I realized that we are generally dishonest. I do not mean, we are a pack of liars. I mean that society expects us to be brave, tougher, resilient, and nearly perfect in our attempts to manage T1D. We have accepted this challenge and adopted the policy that we are not to burden others with how hard and ugly this disease really is.
So, I’m here to say, it is okay to be honest.
There is nothing wrong with looking at a duck and calling it a duck. There is equally nothing wrong with saying T1D is a monster and we are battling a monster. We do not need to sugar coat what we endure.
I am not advocating whining and complaining non-stop, but raising awareness does require honesty.
When we do anything in life, we are raising awareness about T1D. When we test our blood sugar levels, and hold our ground that it is not sanitary to do so in the bathroom, we are raising awareness that we deserve to have reasonable accommodations in the workplace or at schools to manage our disease that hovers over every action we make during the course of our day, and certainly needs diligence to address it whenever it is necessary to avoid or treat high and low blood sugar levels.
We also raise awareness when we say that we need people around us to know what to do to help us take care of ourselves. Teachers, coaches, bosses, co-workers, family, and friends are all a part of our community that stand between being healthy and needing to treat us in an emergency. We do not only need them to understand how to administer glucagon during extreme hypos, but also to know that when we look pale or disoriented in any way, to check on us and be our extra pair of eyes so we can avoid those extreme circumstances.
Obviously, there are the bigger battles…504 plans and their enforcement, making sure that our T1D children do not get excluded from field trips, camps, and other activities due to lack of desire to train staff and volunteers to help the child manage diabetes. There are the workplace battles, as well.
The truth is, we need to also raise awareness within our own community, too. Having T1D is not a cookie cutter scenario. There is a spectrum that we fall under from well managed (with minimal effort) to Brittle Diabetes where T1Ds are constantly in and out of the hospital.
We need to be honest with one another and show compassion no matter what end of that spectrum we fall under. If you are one of the easily well managed T1Ds, don’t expect that your situation can be duplicated by someone on the opposite end, or even in the middle of the spectrum. Your case is unique, as unique as your fingerprint. We may all have fingers, but that does not mean that those little lines and scars on our fingers match. Be proud of your accomplishments. As a community, even though we may feel jealous of people with fantastic A1Cs, we should cheer their efforts on and be happy for them, as we are of those that do not have T1D.
On the flip side of that scenario, just because people consistently have fabulous fasting blood sugar levels and post them on Facebook on a daily roll call, does not mean you should opt out just because your levels are consistently higher, or you cannot hit that target A1C that a fellow diabetic routinely hits. Your fingerprint is different. There is nothing to be ashamed of, at all. If anything, participating helps to motivate others and helps them to feel like they are not alone. Because there are many others somewhere close to the end of the spectrum where you reside.
The whole point of doing research on T1D to manage your condition, of joining support groups, is to not be alone with this disease. Don’t downplay what you go through and don’t forget about your successes along the way.
Honesty is the best way to raise awareness. I try not to hide how hard my bad days are, as well as to still have hope in spite of those hard days. It is not perfect. I am moody some days. I am hyper on others. I am apathetic some days. I am mad or depressed on others. This is one hell of a rough ride. It has more ups and downs than any roller coaster at any theme park anywhere in the entire world.
Not being perfect, admitting that this is sometimes or often a struggle, is relateable. we need to relate to someone. When we are able to be honest, not just as diabetics, but also as parents caring for a T1D child, we find friends and allies that “get it.”
When someone is in your life that you can relate to, you have great medicine on your side and you can truly help someone else to have that same medicine, too.
Don’t deny yourself good medicine. Our community needs that medicine more than ever to one day find a cure, but also to get through each and every day between then and now. Together, we can do anything!