Life is not worth getting worked up over the little things. And living with a highly stigmatized disease is not easy. Insensitivity is around ever corner, and it comes most often from family and friends, people who should know better. I try and get past the comments, but sometimes it just doesn’t work. And today, I cannot let the insensitivity go.
I am angry.
It happened like this:
I was talking to someone about how Johnson & Johnson is leaving the insulin pump business. Their insulin pump is old and outdated. They didn’t seem to be investing in new technology. My personal opinion, it was only a matter of time before they closed the business.
Which for me is surprising. Diabetes is one of the world’s fastest growing chronic diseases – if not THE fastest growing. Of course, this is predominately type 2 diabetes, but type 1 diabetes is showing a higher prevalence as well.
Anyway, J&J is leaving the insulin pump business. And this person immediately responded,
“Leah, they need more people with your disease.”
Wait…What?
I was shocked. I still am.
This comment came from someone who should know better.
Type 1 Diabetes is an INCURABLE autoimmune disease. That means that my body, one day on it’s own, decided to attack all insulin producing cells in my body and kill them. I no longer produce any insulin. Insulin is a hormone that the body absolutely requires to sustain life. Without it, I die. One more time, I did NOTHING to cause this disease.
My life since an October day in 2006 consists of insulin subcutaneously flowing through an insulin pump, where I need to change the injection site every two to three days. Nothing is automatic. The machine doesn’t just “do the work” for me. I need to input the amount of insulin I need for EVERY meal EVERY day for the rest of my life. A drug that can kill me with even half a drop more than needed. Did I mention, I need to make life or death decisions every day?
WHY?
Because people think my disease should be for profit.
A disease I did nothing to contract.
A disease that is not curable.
A disease that requires 24/7/365 attention.
I fight for my life every single day, and nobody knows.
I live with an invisible disease.
P.S. This person is fully aware that I am type 1 diabetic. It is actually the same person that inspired me to write, Diminishing Diabetes.
It doesn’t help with pumps being so expensive and insurance companies being all about money
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You can tell them that we don’t need more people to get diabetes, we need easier pump approvals. Or even a pump covered entirely by every insurance once you get T1D. Like an automatic system that allows us to get the best care instead of years of struggling to finally receive a pump. Not everyone with T1D is so lucky to have a pump approved 🙂
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