“In July 2024, a 33-year-old woman with type 1 diabetes was out boating on a hot day when her insulin injection device became dislodged. When she was able to get out of the river she was visibly unwell and an ambulance was called. The hospital was overcrowded. Lying in the hallway, she was given fluids but no insulin, despite her boyfriend repeatedly telling staff she was diabetic. She was discharged, still vomiting. Her boyfriend found her dead the next morning.”
That's the opening line of an article written by my friend, journalist, and type 1 diabetes advocate Miriam Tucker that appeared in the August 16th issue of Medscape. “What all healthcare professionals should know about type 1 diabetes” The article goes on to discuss other instances and situations where a lack of knowledge about type 1 diabetes can create life-threatening situations.
I recently had some tests done to check my heart health. I have had elevated LDL levels for the last few years, as have my parents and siblings. I've been following a clean low carb diet and exercise routine – walking 45-60 minutes a day and lifting weights at the gym twice a week – but my LDL levels have not improved. This is due to genetics, not diet like many others.
The last treatment I had was a week ago. AngiographyMy blood sugar remained low all day because I couldn't eat anything after 8:30am, my procedure that was supposed to happen at 1pm didn't happen until 4pm, and I had to ask for a few sips of juice three times in that time.
In the angiogram room, I had to let go of my phone, which I had been closely monitoring my CGM readings on. When the test started, my blood sugar was 69 mg/dl. I told all the medical personnel around me, and they placed my phone where they could hear the alarm. I trusted that the stress would hit me right away and motivate me.
Similar to my previous post on self-advocacy, I believe we have a duty to educate ourselves, our fellow type 1 diabetes patients, and the medical professionals who genuinely want to help us. Unless a medical professional specializes in endocrinology, they likely have little to no education about type 1 diabetes.
You can be that educator yourself: if you feel comfortable, use your interactions with health care professionals to inform them of what it's really like to live with T1D, because how will they ever learn otherwise?
I love educating others, and not just in formal ways like this blog or presentations or books or articles. I also enjoy meeting other people who wear CGMs, so I reach out to them all the time. One of my secret pleasures is injecting insulin in the middle seat on an airplane, just waiting for the person next to me to ask what I'm doing. Unfortunately, they rarely notice.
Still, when I can, I do all I can to help others understand the intricacies of this incredibly complicated and little understood disease, and I have told my husband on multiple occasions that if I were to end up in hospital, he would need to watch me like a hawk to make sure what happened to the 33 year old woman mentioned above doesn't happen again.