Insulin Nation readers write many thoughtful responses to our stories. Below we share three letters we’ve received in the last few months.
1. People either loved or hated our article “Five Things People with Type 1 Should Stop Doing Already.” In the article, I suggested people with Type 1 should stop saying that they won’t let diabetes stop them. Here is a great response from a past contributor:
I am a little disappointed in your most recent opinion piece. I understand it must be frustrating sometimes to see the way that people with Type 1 express themselves via Insulin Nation, but I don’t believe it’s really your place to comment, let alone criticize. The point of the Diabetes Online Community is for people who live with a chronic, straining, and difficult disease to have a place to go to express themselves to other people living under the same conditions. People with Type 1 have others tell them their whole lives how to manage it, control it, live, etc., and we should be able to find freedom from “unsolicited advice by outside observers” on a website called Insulin Nation.
I was particularly upset by the first “piece of advice” in your article. When I was diagnosed at 17, my parents and doctors made it very clear that diabetes wasn’t going to stop me. Your sentence about it raising your blood pressure is insensitive and cruel. You are joking to a community of people who monitor numbers every moment of every day that your blood pressure rises because of a cliche? Trust me, while that may be funny to some, it’s not to me.
Of course we don’t have a choice as to whether or not it will stop us, and yes, there have been and will be times that diabetes stops me. For example, while traveling in Paris at the end of last year I suffered a severe hypoglycemic event due to the amount of walking and several other factors. As a result, I passed out and suffered a seizure outside of Notre Dame. I spent the rest of my afternoon in a hospital, working with lovely French doctors to make sure I was back in a safe range. Diabetes stopped me cold that day — it almost took my life, but when I got out of hospital I told my boyfriend that this seizure and hospitalization wasn’t going to stop us or change the rest of our travels in Europe. I could have decided to go home, or take everything much easier, but I made the choice to keep going as if nothing had happened. We continued on just as planned.
Some of us need to tell ourselves that the disease won’t stop us, even if it can, to keep going and move forward. There aren’t any people with Type 1 who really think diabetes will never stop them. Its stops us all at different points in our lives, but we hold onto the hope that we can persevere and do the best we can given this disease. It is not your place to criticize how people handle their disease or, even worse, to shame them.
-Meredith S.
2. Stories involving people with Type 1 passing away often elicit strong reactions. Below, a reader takes issue with the article “When a Teen Stops Treating His Type 1,” saying that the title might be misleading and that the teen’s mother might be unfairly blamed:
I think it is a stretch that this boy refused to treat his Type 1 diabetes. I take issue with not only the supposition that teenagers cannot be trusted to care for themselves properly, but that this mother was somehow criminally neglectful for allowing her child the freedom to be in control of his own medical care and body. Independence begins to raise its head during the tween ages. Being seen with your mommy trailing behind you to watch over you like a hawk, give you your injections, and admonish you to not eat this or that in front of your friends is abhorrent to adolescents.
I think it’s sad that the mother was arrested. I know how awful I feel while sick, with all my energy going to survival and trying not to vomit every two minutes. This takes so much energy and one is so weak that trying to check one’s blood sugars and give injections is an impossible task. This scenario is why physicians implore people with diabetes to get annual flu shots.
This boy’s death is what flu does to a person with diabetes. It is how fast the flu and (potentially) ketoacidosis work together. It happens very, very quickly. This young man may not have been inadequately treating his disease, but rather a virus triggered his body to respond in a dangerous way. They may not have known about or experienced ketoacidosis before. I know I didn’t learn of it until my first ICU hospitalization with it. If you get a patient and parent who have no prior knowledge of this, then the symptoms can be masked and associated with the stomach flu, which he had.
I truly hope that this mother is treated fairly and isn’t raked over the coals for something she may have been ignorant of or that happened so quickly that nothing medically could be done for the boy.
-Nicole Holcom
3. Sometimes we get advice from our readers. Here’s one woman with Type 1 who says an early workout routine has helped her lower high blood sugar levels:
I started a 4:30 a.m. workout session earlier this year, as I used to wake up with glucose levels that were, in my opinion, dangerously high. I discovered through a visit with my physician that I was experiencing a mild case of Dawn Phenomenon, a condition that produces hormones which increase insulin resistance from 2:00 am to 8:00 am. Learning this vital information, and that people with diabetes may decrease their insulin levels from an early morning routine of fitness and healthy eating habits, I took action. I can testify after two years of my Type 1 diagnosis that I have successfully lowered my A1C level from 11.2 to 6.5.
-Doris Hobbs
If you have an opinion you’d like to share about an Insulin Nation article, please email me at cidlebrook@selfrx.com.
Letters have been edited for length and clarity.
3/30/2017 – This story was edited to remove the last name of the first letter-writer. Insulin Nation had not verified with the author that we had permission to use her correspondence before publishing her story. Permission has now been granted. We regret the error.
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