Today marks my 8th anniversary with type 1 diabetes. It’s been an interesting journey, one that ultimately led me to study nutrition and become a registered dietitian. I’ve had the unique privilege of experiencing diabetes as both a patient and a healthcare provider, and it’s taught me a lot. Here are a few important lessons I’ve learned over the past 8 years. I hope you find them helpful.
1. Find an awesome doctor, even if you have to shop around. It makes a difference.
I’ve been fortunate enough to have 2 great doctors over the past 8 years. My first endocrinologist made it a point to assure me that I could avoid all the scary side effects and complications if I managed my disease well and made available any resource she could find to help me out. She prescribed new forms of meds (lantus pens, etc) as soon as they became available and was quick to turnaround an expired prescription or return a call. She warned me early on that hypothyroidism could develop later on, but that it was easily managed and not something to fear. This turned out to be a huge comfort when I was finally diagnosed 2 years ago. My doctor in Boston has also been awesome.
Type 1 diabetics are dependent on insulin and, because we don’t make any insulin, can be subject to changes in blood sugar due to things beyond our control. Look for a doctor who responds to requests for prescription refills, returns calls in a timely manner, and spends time answering your questions.
2. You have some control over your body and your disease…
Even though diet and exercise are not treatments for type 1 diabetes (we need insulin and, until something new develops, always will), they can make a big difference in how well your disease is managed. I have always been active (working out 4-6 times per week), but recently switched to a more whole foods based diet – inspired by the Paleo diet – and saw a reduction in the amount of both long and fast acting insulin that I needed and managing my blood sugar became much easier when I gave up processed and convenience foods. It is up to you to eat a healthful diet moderate in carbohydrates, exercise regularly, and be vigilant about checking your blood sugar and identifying and avoiding problem foods (for example, I eat candy maybe twice a year because I don’t it will result in a high blood sugar 95% of the time). That said…
3. YOU DO NOT HAVE COMPLETE CONTROL
Whether you believe it’s due to God or science, you have to admit that the human body is an incredibly complex structure. Your blood sugar can be influenced by hormone changes, getting a cold, being stressed, etc. This means things can go awry even when you’re doing everything right. So while you can control what you eat and how much insulin you take, you can’t control everything. I used to struggle with high blood sugar on competition days in college, no matter how much insulin I took, until a sports RD at Florida helped me figure out that it was because my stress levels were higher, even though I didn’t really feel stressed out or anxious.
It took me a long time to learn that I can’t control everything, and managing my blood sugar was pretty stressful until I did. If you get a high or low blood sugar and don’t know why, just remember that you can’t possibly know everything going on in your body. Correct and move on. If it happens regularly, document your food intake and glucose levels for a few days and then contact your doctor. You can’t control everything, but you CAN pay attention to your body and work toward understanding how different situations or foods affect you.
4. Get help if you need it.
A type 1 diagnosis can feel unfair for some. The science doesn’t 100% know what causes it or why it – along with type 2 – is increasing in prevalence in American youth. What we do know is that it is a genetic predisposition that develops into diabetes when triggered by an environmental factor. This causes the immune system to attack the insulin producing cells, eventually killing them off. It develops in young children to mid-adults and isn’t usually associated with obesity, physical inactivity, or any other lifestyle factor. When I was diagnosed I was 17, very active, ate healthy, and had NO family history of type 1 or type 2 diabetes. Because of this, it took me a while to accept and move forward. My parents encouraged me to talk to someone (like a therapist) and I refused. Looking back, I wish I had. So, my advice is: if you’re having trouble dealing with your type 1 diagnosis, go see someone. There is no shame in airing out your issues to a trained and caring ear.
5. There is really nothing you can’t do.
I’m serious about this one. I played four years of college sports. I’ve traveled, done half marathons and CrossFit competitions. And to outshine my small accomplishments, there are successful Olympians like Gary Hall Jr and professional athletes like Jay Cutler with type 1 diabetes. Other celebrities with type 1 include singer Bret Michaels and actress Mary Tyler Moore. So far, the only thing I haven’t been able to do because of diabetes is join the Navy. And so far that’s worked out just fine.
6. Get supplies and meds that work for you.
Just because the hospital gave you X brand meter doesn’t mean you have to use it. I’ve used Flash, One Touch, and the Walmart brand and they all worked fine. Walmart is awesome if you don’t have good (or any) insurance. Personally, I love my One Touch because it’s tiny and purple. Get insulin in forms that work for you. If you can afford it, there is no reason not to have pens. I literally fit ALL of the supplies I need into a makeup bag from the Body Shop (left). I’ve also used makeup bags from Walgreens and Target, although this one has lasted longer. In addition, pens and testing supplies fit pretty easily into most clutches or mens’ pockets.
7. People don’t care as much as you think.
When I was first diagnosed I chose to be upfront about it. I told all my friends, family, and coaches. I also tend to mention it fairly early on in new relationships with friends, coworkers, or boyfriends. I knew others who kept it a secret, and I can’t speak for their reasons, but I’d guess it had to do with fear of what other people would think or how they’d react. Quite frankly. I’ve found this to be an unwarranted fear. I’ve mostly been met with curiosity, interest, and support. Yes it’s hard to slip into conversation. But being open about it is better for your mental health, and having people around who know what’s going on can be safer for you if ever you have an issue or a bad episode of high or low blood sugar.
8. Take care of your body – you only get one.
I’ve said this already, but eating well, exercising, and maintaining healthy habits are very very important. Some of the complications that diabetes can cause include retinopathy, neuropathy, poor circulation to the feet (which is what leads to amputations in severe cases), kidney disease and increased risk for heart disease. These are all not awesome and a little scary. As an RD I’ve educated patients about the renal diet, and even followed it myself for a week as part of my internship. Its one of the most difficult diets out there. I don’t want to scare anyone, but my point is this: take every measure you can to eat a good diet, control your blood sugar, and stay active. Maintain a healthy weight, because type 1 diabetes (insulin deficiency) can still turn into type 2 diabetes (insulin resistance) later on if you continue with or adopt poor diet and a sedentary lifestyle.
Final Words of Advice
If you remember only 3 things that I said, remember to…
Shop around for a doctor, supplies, and insulin that you like and works for you.
Accept that you can’t control everything, but do your best to control what you can.
Eat well, be active, and do awesome things.