I’ll start out by saying I consider myself lucky. Yes, you read that right. I consider myself fortunate to be in a country that’s consider to be progressive in technology and medical care. There are people in countries where electricity, consistent food supply and medications just don’t exist. For these people, the cost of chronic illness is too often immediate death.
Given that the US is a country with immense advancement, it’s troubling that chronic illnesses which we have treatments for, can be a heavy burden for the ill to carry. There’s a few loopholes for certain people who fit unique criteria, but I think it’s fair to say that having certain chronic illnesses can be more debilitating than the physical symptoms themselves.
With my dad’s big corporate America job insurance, I was well taken care of at the beginning of my diagnoses. Being a brand new, type 1 diabetic, I also had less issues that required medication, and was experiencing a “honeymoon” period; a time which the new diabetic is still producing a bit of insulin. Things were smooth sailing that first year.
Then the recession hit, and my dad lost his 21 year engineering job…and his insurance. This was when the financial cost of my chronic illness first came crashing down, and it took a first hand toll on my dad. He dipped into his retirement fund to care for me, and the repercussions still exist for him today. He’s almost 60, and he will never retire. I can say with all certainty that chronic illness is responsible for this. Chronic illness has quite a ripple effect, it’s victims are often not people with an illness themselves.
Now that I am grown, the financial burden has shifted to me. We know all too well the effect diabetes has on the wallet. My husband has sacrificed immensely. When he married me, he had $20,000 in the bank, no debt. We’ve made a 180 degree turn and our bank account and debt have traded places. We work tirelessly to pay off loans we’ve taken out. We feel the harder we work, the crazier healthcare gets, and the less they want to cover.
From the outside looking in, it seems as if I have a “dream job” filled with excitement and travel. However, we’ve chosen to live with my parent’s while I work on my writing career. I’m not sure when, or if, we will own a home. But experiences together are more important to us anyway. Not to be dramatic, but my blood sugar runs high a lot, I ration insulin, so I may not have the longest life. Chronic illness comes at a great cost in a metaphorical sense as well.
At this point, I stand by my decision not to have children. Type 1 diabetics can absolutely have healthy babies, but I don’t feel confident that I can keep my numbers in range, especially with insulin at high prices.
There’s such a hefty price tag, and I find myself incredibly angry at my own country for not fighting harder to bring drug prices to fair levels, or to cure the disease all together. I want the “research” to be more transparent so I can have confidence and hope in what they are doing. I not only want my disease cured, but everyone else’s cured too. I want my country to use the principals on which it was built, and the things that has given it a reputation of a place where you fulfil hopes and dreams.
I’ve been robbed of a conventional life; I don’t own a home, I don’t have little ones, I’m have a crazy amount of debt at a young age, I feel ill the majority of my days and I feel my life will be cut short. But for some reason, I do feel a lot of hope. Something deep down is telling me people are starting to understand. My heart is telling me something is on the horizon and I am extremely grateful for this sense of something good.
#Insulin4all, an initiative set into motion by T1International, is the perfect depiction of this positive change. Much needed awareness is turning heads around the world. Many people didn’t realize the issues that exist when dealing with a chronic disease, like diabetes. People are advocating by using tools on T1International’s site, and are truly changing how people see and respond to this disease. The roots of misconception have been deeply shaken, and this is what it takes to begin making change.
Use your voice to raise awareness. If you educate one person, you’ve planted a seed that will grow. Let people know the true cost of chronic illness, and let’s push for further progression.