My Diabetes Gifts
Five years ago this week my life and my family’s lives changed forever when I was diagnosed with type 1 diabetes. I was in my mid thirties, a wife, and a mom of 2 small kids when I suddenly found myself buried under a mountain of information that I needed to learn in order to stay healthy and alive. I was terrified and overwhelmed and started experiencing the endless emotional roller coaster that comes with living with diabetes and I was completely unprepared. Needless to say that the last 5 years have been very challenging.
As my 5th diaversary approached, I realized that even though the roller coaster and challenges have been (and continue to be) difficult, I am very grateful for the unexpected and wonderful lessons I have learned because of my diagnosis. Living with type 1 diabetes is not how I would have chosen to live my life and with this diagnosis I could have very easily adopted a negative outlook. Diabetes management is 24/7 with no vacations (ever!) and it takes a toll mentally and physically. I choose to be positive. I certainly have my down days and I’ve struggled with diabetes burnout in the past (and probably will again), but I chose to see the positive and important lessons that having type 1 diabetes has given me. These lessons are not new; we’ve heard them for years but for me, it was my diagnosis that forced me to focus on these areas to ensure that I am living the best, healthiest life that I can. I consider these lessons to be my diabetes gifts and they are all works in progress that require ongoing attention and practice.
With myself. With my blood sugar. With other people.
With myself: I’m an impatient person learning to be patient. I don’t always carb count correctly. I sometimes get frustrated with managing diabetes day to day and want to quit. I need to listen to my body and adjust my life when I don’t feel well. My self-worth is not tied to my blood sugar number (that’s a hard one). Diabetes is complicated. Diabetes is hard. Diabetes requires patience.
With my blood sugar: Blood sugars will wreak havoc at the most inopportune times (like having a low as you are busy getting the kids ready to drive them to an event, or when you are out shopping, or when you are getting reading to speak at an event) and it’s frustrating because you find yourself sidelined until the blood sugar is back in range. Sometimes it seems like blood sugar has a mind of its own and doesn’t behave like you think it should. There’s nothing to do but to treat the high or low and be patient.
With other people: I get asked a lot of questions when people find out I have diabetes (or see my insulin pump) and most of the time I am more than happy to answer their questions and talk about T1D. I do have to exercise patience in situations when people make comments or ask questions that seem thoughtless or judgmental. There is A LOT of incorrect information out there about Type 1 and I know that by sharing my story, I will help to educate others. If you know someone with Type 1, please check out this great etiquette resource!
2. Less Judgement, More Empathy
People judge people. Living with diabetes, you can feel judged by family, friends, healthcare team, and complete strangers about what food you eat, the fact that you need to give yourself injections/wear a pump, and your blood sugar readings. It can feel intense and isolating. Because I have felt judged, I am so much more aware of my own judgement of others and I try to be much more empathetic. I don’t live that person’s life and I don’t know everything they go through, so I have no right to judge them. Instead, I try to understand them and their situation.
3. Sense of Community
A sense of belonging is a proven human need (check out Maslow’s Hierarchy of Needs). Five years ago my sense of belonging got knocked off its axis because I suddenly needed to consider the potential impact that this life altering disease would have on me with everything thing I did and everything I ate or drank. That’s a hard thing to fully understand unless you live it. It wasn’t until 2.5 years after my diagnosis when I was in a room full of people living with type 1 that I felt like I fully belonged again. I receive tremendous support from my family, friends, and healthcare team, but a true sense of belonging comes through connecting with others who truly “get it”.
Since then, I have met so many great people living with type 1; I even went to camp with other adults living with type 1 through Connected in Motion (CIM)! I wanted to regularly connect with others who “get it”, so I started a Meetup for adults living with type 1 in my community. It’s a great way to share information and ask questions. There are also several great online resources/communities in addition to CIM including Beyond Type 1, Glu, Type 1 Diabetes Think Tank Network, and Type 1 Diabetes Memes to name a few.
4. Health Awareness & Advocacy
I constantly have to check in with myself to see how I am feeling — am I feeling symptoms of a low blood sugar or high? As a result, I am more aware of all aspects of my health and I am more willing to get the healthcare advice that I need. Good health is so precious and not to be taken for granted. I have also become a stronger health advocate for myself. I know my body and health better than anyone and it’s my responsibility to seek medical advice when needed, ask questions, and fully understand the advice I am given. If I am not satisfied with the information I have been given, then it’s important to seek a second opinion.
5. Food Awareness
When I was diagnosed, my relationship status with food changed to “it’s complicated”. Food initially went from being a friend to a foe and now it’s back to be a friend most of the time. Food had been a positive necessity that provided nourishment and brought people in my life together and then it became the enemy because it raised my blood sugar too high which made me feel awful. Yet, there were times that food was still my hero when it rescued me from a low. I had to learn to carb count, which means that I need to know how many grams of carbs are in everything I eat. For a long time, I felt that I lost the freedom to eat whatever I want, whenever I want, and I resented people who did not have this restriction in their lives. Food is still complicated, but the joy has returned (most of the time). To answer the “can you eat that?” question, the answer is yes. If I give myself enough insulin, I can eat it. I may choose not to eat something depends on how I’m feeling. Carbs are everywhere so the key for me is moderation, eat healthy, and allow treats from time to time.
6. Perfection is Not for Me
Being a perfectionist is exhausting. Being a perfectionist who has type 1 diabetes is a recipe for disaster. Perfection is not attainable in life or in diabetes. I am a recovering perfectionist and I remind myself every day that “great” or “good enough” are realistic goals and “perfect” is not, especially when it comes to diabetes. It’s a constant challenge which requires a great deal of patience (which I am also learning).
7. The Importance of Stress Management
We all know that stress can wreak havoc on the body if not properly managed. Poorly managed stress presents an added complication to people with diabetes as stress drives blood sugar up and ongoing stress will make it difficult to keep blood sugar in range. Practicing stress management techniques is an important part of diabetes management; it’s something that is extremely difficult for me but I have an added incentive to continue to develop stress management practices.
8. Ask for Help!
Whether it’s been my stubborn nature of thinking that I can handle everything on my own or me not wanting to put anyone out, I’ve never been one to easily ask for help. I’ve learned that the best way to live a healthy life with type 1 diabetes is to have a strong support system that can help. Those people who support me — my family, friends, and healthcare team — can only help me if they know that I need help. It’s hard to be vulnerable and ask for help, but it’s necessary when I have a low or high, when I can’t drive (because of the low), when I need to lay down, or need help managing the emotional roller coaster. I’m not comfortable with it, but I am learning.
9. Respect Your Feelings
When I was first diagnosed I maintained a positive outlook by telling myself that diabetes wasn’t THAT bad. I told myself that it wasn’t necessarily a terminal diagnosis and it would force me to live a healthy lifestyle. I didn’t feel like I could be sad because there were others who were struggling with their health more that I was. When I did feel sad, I immediately felt guilty. While my intent was to think positively and be grateful that I could live a healthy life with diabetes, I was not honouring my feelings. The type 1 diabetes diagnosis significantly changed my life and I needed to let myself feel the sense of loss I was experiencing. Living with diabetes is an emotional roller coaster and the person on the ride needs to give themselves permission to honour and experience their feelings and ask for help when they need it.
10. Humour Helps
Being able to laugh about a scary, life altering disease has helped me cope. For example, it’s funny to me when people pronounce diabetes as diabeetus so I refer to my “beetus” from time to time. A friend even got me my favourite mug! (Thanks K!)
Or, when I call out to my husband across the grocery store parking lot that he needs to drive because I am not high enough and then realize what that must sound like to people without the beetus. Humour has been an important part of how I have been able to cope. Type 1 Diabetes Memes is a great site to visit for a laugh!
The last 5 years have been hard, overwhelming, enlightening, and filled with personal growth. Through the ups and downs of living with diabetes, the lessons that I unexpectedly found have been so valuable in helping me to live a happier and healthier life. Having a positive attitude is a choice that I make every day. Some days are hard and I feel down and that’s ok. If you know anyone with Type 1, check in to see how they are doing (although please read the etiquette guide first!).