“I began to breathe again after speaking to you,” the mother of a college student with newly diagnosed with Type 1 diabetes told me.
Faced with a new diagnosis, it is easy to feel overwhelmed. I think some of the suggestions I gave this mom can be helpful to anyone who suddenly has to meet the challenge of a new medical condition. Here is my thumbnail sketch of the essential tools:
- Knowledge. Knowledge truly is power—and with that power, peace of mind. Try to find the best resource out there on your diagnosis that is written specifically for patients. If one doctor doesn’t know, keep asking. For Type 1 diabetes, for example (in my opinion), that would be the Barbara Davis Center’s Understanding Diabetes by Dr. H. Peter Chase. It’s full of basic facts about Type 1; the medical issues that Type 1 diabetes patients commonly encounter; and answers to the questions that a patient challenged with a new diabetes diagnosis would logically ask, with very straightforward, easy to understand explanations.
- Most urgent aspects: Ask your doctor what are going to be the medical situations you need to be aware of for this diagnosis, and what should you do to treat those? In the case of Type 1 diabetes, that would include how to recognize and treat low and high blood sugars. In the above case, the daughter had left the hospital without really knowing how to treat those and what the parameters were. But almost every new serious diagnosis has important medication side effects or critically important aspects, and you will want to know what they are.
- Organize the data so you can stay on top of it. You can do this in two ways: get a notebook or folder to organize your laboratory tests, important radiology results, and your notes from doctor’s appointments. Second: get a pillbox, if you will be taking new medications. Studies show that remembering to take pills is particularly difficult when your schedule changes—and in my life that is a daily event. Pillboxes REALLY help with this. Added benefit: if you are taking your medication on time and in the right way you will feel better; and if you feel better it is easier to stay on top of things. Success breeds success. For Type 1 diabetes, you will want to remember always to have two extra medications with you: glucagon, to reverse the effects of insulin; and extra insulin (and a way to deliver it) in case the usual method you use to deliver it fails. Also: a source of sugar, and a way to test your blood sugar. Always, without fail. And a “go bag” with all of that in it. Many serious diagnoses have some version of this.
- Accommodations. I was just chatting with a patient, “John,” about how our society often insists that we be “strong” and “fight” when faced with a difficult medical diagnosis. The news is full of “hero” stories about those who “work up until the end” whether that end is childbirth — or death, for that matter. But the fact is, many of us work better if we are allowed accommodations, a protection accorded to those with serious medical diagnoses under the Americans with Disabilities Act. In the above case, I encouraged mom to ensure that her daughter receive accommodations for low or high blood sugars while taking a test at school. These blood sugars are treatable, but it takes 10-15 minutes or more, and treating them requires focusing on those blood sugar numbers—which can be a significant distraction when taking a test; not to mention that erratic blood sugars can affect the ability to reason clearly. On rare occasions, high or low blood sugars can present a medical emergency–so treating them promptly is of the essence. I heard of one college student with Type 1 who didn’t do ask for accommodations at her university and when she became very sick during a test, her professor did not make allowances or permit her to retake the exam. So it is better to be proactive and request this accommodation up front. The same goes for accommodations at work or in elementary or high school.
- Find a Support Group. Particularly in the United States, there is almost always a group that will offer you support around your diagnosis. I mentioned the College Diabetes Network to mom. She wrote me that the best part of joining that group was the feeling that “ We are not alone: for us the college diabetes network is amazing! I am now deeply involved in this group.” She added, “This is an amazing community we never wanted to be a part of but are thankful for daily.”
- Finding your team. Your team does not have to include the providers who saw you in the hospital or to whom you were initially referred afterwards. You want to find a team of clinicians who will work with you, who share your concerns, who make you feel like what you are worried about matters and is a legitimate concern; who can help explain to you why you are experiencing the symptoms you describe, what to expect in the future and who are knowledgeable about your diagnosis. One patient with Type 1 diabetes was referred to an endocrinologist who specialized in testosterone disorders. He may have known a lot about testosterone, but not so much about Type 1 diabetes. Pulling together a supportive and knowledgeable team makes everything else so much easier.
- Getting back towards a new normal. “My daughter will live a normal life”–that was a huge realization, this mom said. I recommended that she watch this youtube video about a teenage boy just diagnosed with Type 1 to get a feeling for what that transition towards “normal” can look like. There is no question that there will always be a feeling of “before” and “after.”But for many diagnoses, the “after” can potentially get easier. I told the mom about Will Cross, who despite his Type 1 diabetes climbed Mt. Everest and traveled to the Antarctic (thanks to NASA supplying him with a storage container for his insulin that they used on Mars!). After listening to his story, I told her, the thought of a child spending a night in a college dorm figuring out insulin doses might not seem as daunting.
- That doctors care. Another important realization, according to mom. See #6. Finding the right team for you is a huge part of healing. For Type 1 diabetes, hospitalization and follow-up at a Children’s Hospital or clinic that specializes in Type 1 is very helpful, since they are knowledgeable about this medical condition and often have all of the resources I mention above readily available to patients. In this case, a phone call connected mom and her daughter with a wonderful team.
Could the medical system be doing better, I asked? “Yes,” the mom said: “I think there should be minimum hospital stays for a new diagnosis.” And it was completely overwhelming, she added, when “they told us that Type 1 diabetes is life threatening and made us stressed — then let us out of the hospital with very little education!”
She continued, “The most surprising thing to me was… how I thought I was alone only to learn that so many others have had exactly the same experience. Brita–I thank you for all you have done for us!”
Disclaimer: All patient names and identifying details have been changed to protect client confidentiality. The suggestions given here are not intended as a substitute for the medical advice of your physician.
