“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. The online version is free. It’s full of basic facts about Type 1, the medical issues that 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 understanding how to treat those and what the parameters are. But almost every serious diagnosis has aspects that are critically important to understand, like symptoms you need to be aware of or important medication side effects you will need to recognize. You will want to ask about those so you 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 most people’s lives, 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 four things with you: glucagon, to reverse the effects of insulin; extra insulin (and a way to deliver it in case the usual method you use to deliver it fails); a source of sugar (sugar tablets or juice box); and a way to test your blood sugar. Always, without fail. And a “go bag” with all of that in it. Most serious diagnoses have some version of this.
- Accommodations. John, a patient I advocate for, shared with me his frustration that society seems to insist 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 that 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 out of range 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. In addition, 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. One college student with Type 1 diabetes told me of an unfortunate experience that occurred because she had not asked for accommodations at her university. When she developed a very low blood sugar during a test, her professor did not make allowances for the extra time it took for her to correct it or permit her to retake the exam when she ended up doing poorly on the test as a result of both not being able to think clearly and being rushed. The takeaway: 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; who can help explain 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. 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 at a friend’s house or a college student in a dorm figuring out insulin doses might not seem as daunting.
- That doctors care. Another important realization, according to mom. See #6. Finding the right medical team 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 the clinicians there 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: “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. 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.
