By Amy Campbell, MS, RD, LDN, CDE
Have you recently been diagnosed with type 1 diabetes? If so, you might be feeling a lot of different emotions right now. And you might be wondering what having type 1 diabetes means for you — how are you going to handle taking insulin, pricking your fingers or counting carbohydrates? Can you play sports? Can you travel? Can you ever eat ice cream again? How will having diabetes affect your life at work, school or home? Can you have children? Why did you get this condition in the first place? And will it ever go away?
There are so many questions that pop up when you are hit with a diagnosis like this, and it can be really hard knowing where to turn. Yes, your life as you know it will change — and not necessarily in a bad way. Fortunately, there is a lot of support out there. And you might take some comfort in knowing that you have company: 1.25 million Americans, to be exact. Some famous folks also have type 1 diabetes, including Nick Jonas, Sonia Sotomayor, Kris Freeman, Jay Cutler, Gary Hall, Scott Verplank, Bret Michaels and Nicole Johnson. They all lead very active lives and they haven’t let their diabetes slow them down. It hasn’t always been easy for them and it won’t always be easy for you, either. But thanks to research, innovation and a strong type 1 community, living with type 1 diabetes is most definitely doable. These four tips can help.
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Confusion, fear, grief, despair, anger, shame…these are all very common feelings that you may be experiencing. In fact, being diagnosed with type 1 diabetes (T1DM) means you’re very likely to go through the stages of grief as developed and defined by Elisabeth Kubler Ross:
Your own path to accepting and coping with your new diagnosis may be very different than someone else’s — and that’s OK. As hard as it can be to face your emotions head on, try to let yourself feel them and get through them. You may need some help doing this. For some people, talking to a friend or family member helps. For others, joining a support group or an online community helps them deal with the myriad emotions and questions that they’re facing (check out TuDiabetes.org, BeyondType1.org and DiabetesDaily.com). You might even decide to talk with a mental health professional (in fact, this person may very likely be on your diabetes care team — more on that in a moment).
Team? What team? Your diabetes care team! Your primary-care provider, whether that be a doctor, nurse practitioner or physician’s assistant, is your gatekeeper, but he or she can’t do it alone. You need a team that has your back. Here’s who to consider having on your team:
Sometimes called a PCP, he or she takes care of your overall health needs and can refer you to specialists and other services that you may need.
This doctor specializes in treating diseases of the endocrine system, including diabetes. Not everyone with diabetes sees an “endo,” but if you have type 1, it’s highly recommended.
This person may be a nurse, dietitian, pharmacist or other profession who has special training in working with people who have diabetes. You might even have more than one CDE on your team!
A dietitian may also be a CDE, and has training in nutrition, especially as it relates to managing diabetes. Your PCP can provide you with a referral to a RD in your community. Many RDs are found in endocrinologist offices, as well.
Your pharmacist can be an invaluable resource for you when it comes to managing and understanding your medications.
Make sure an ophthalmologist or optometrist is on your team for sure, as at least once a year, you will need a dilated eye exam to check for diabetic retinopathy.
Hopefully you already have a dentist. If not, find one soon, as people with diabetes are more likely to have periodontal disease and other oral health issues.
The above team members are the core of your team. Depending on certain factors such as your age, other health conditions, and your lifestyle, you might have a podiatrist (foot doctor), physical therapist or exercise physiologist, cardiologist, nephrologist (kidney specialist), social worker and/or mental health counselor.
Finding out that you have diabetes can be a shock to the system, and it can definitely take a while to process everything. But as best you can, be open to learning about your condition and learning how to manage it. There’s no cure (yet) for T1DM, and it’s not something that can easily be fixed by, say taking a pill or having surgery. Learning how to manage diabetes (aka “diabetes self-management”) is the best way to keep living your life and staying healthy at the same time. So, what will you need to learn? For starters, you’ll need to learn how to:
• Inject insulin
• Prevent and treat hypoglycemia (low blood sugars)
• Check your blood sugar
• Understand and make sense of your blood sugar readings
• Check for ketones
• Count carbs and balance your carb intake with your insulin
• Check your feet
• Manage your diabetes when you’re sick or under a lot of stress
• Prevent complications related to diabetes
Down the road a bit, you might decide to use an insulin pump and/or try CGM (continuous glucose monitoring). You’ll also likely need to teach others about your diabetes so that they can help you, if needed. For example, you may want to teach someone close to you — a spouse, family member, roommate, friend or co-worker — how to recognize signs and symptoms of hypoglycemia and how they can help you if they occur.
Where do you learn all of this? Start with your diabetes care team. You’ll need to have at least a few sessions with your CDE and/or dietitian. Ideally, attend a diabetes program in your community. You’ll learn a lot not only from the instructors but from others in the program, as well. Ask your doctor, check your local hospital or call your local office of the American Diabetes Association for a diabetes program nearby. And don’t forget that there is plenty of information online. Start with this website, and check out others, too, including:
• American Diabetes Association
• Centers for Disease Control and Prevention
You can’t learn all of this in a day or a week. And there are new research findings, treatments and technologies coming out all the time. Expect to continue to learn for as long as you have diabetes!
As you start managing your diabetes, you’ll be faced with a lot of “numbers,” meaning, blood sugar results, A1C levels, blood pressure, cholesterol, kidney function tests… It’s very easy to get caught up in these numbers — after all, they’ll help guide how you and your health-care team manage your diabetes treatment plan. It won’t always be easy, but try not to let these numbers define who you are as a person. You’re not a “bad” person if your blood sugar is too high, for example.
Instead, use your numbers as a tool so that you can see what’s working and what isn’t. Maybe you need more (or less) insulin before dinner. Maybe you could eat a small snack before you go for a walk. Maybe you could benefit from taking a medicine to help bring your cholesterol down. Be open to trying different things to find out what works best for you…and try not to be too hard on yourself!
Want to learn more about type 1 diabetes? Read “Type 1 Diabetes Questions and Answers,” “Six Type 1 Diabetes Symptoms You Need to Know” and see our type 1 diabetes videos.
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