A friend of my sister’s toddler was recently diagnosed with type 1. My heart ached at the thought. I immediately wanted to reach out to this mom whom I’ve never met, but knew she would not be in the state of mind to talk about this traumatic event just yet.
I want to tell her that it’s okay to be afraid. It’s okay to be angry and confused and to feel inundated with enormous amounts of information. For a while she will just try to get from one day to the next. It’s okay that she panics at the mere thought of her small child getting sick, slipping into a coma, having long-term complications. It’s normal for her to want to dig into a social hole where she doesn’t want to talk to anyone about anything.
I want to tell her that eventually the continuous fear will subside and she will find herself with moments of forgetting about the disease completely. She will laugh, celebrate, and be happy again. It will take some time of learning how to cope and to trust her instincts, but she will get there.
If I were to sit down next to this woman today, I would ask her to open up and let the words flow out of her-sometimes you learn what you’re really feeling simply by rambling on with thoughts just as they cross your mind. I would let her yell. Then, after she cried, releasing her emotional burdens, I would offer her a short list of steps that I took which helped me feel that diabetes was not going to dash my entire life.
1. Browse diabetes social networks for awhile. Find diabetes parent groups and simply listen to what others have to say. Diabetes social networks are “safe” places where you can express yourself: the diagnosis scare, the A1c successes, the middle of the night glucose readings, the emotions tied into bearing even more responsibility for your child’s health, the worry about your toddler’s future, dietary choices, treatment options, cure possibilities.
Eventually, you will begin asking questions of your own. Read what others with the disease have to say about their lives. Most of us are actually well-adjusted adults who came out stronger on the other end of the diagnosis. Some will use the site to vent their frustrations into a world where every single person can relate on some level. We haven’t lived your exact story, but we can empathize quite a bit. I never thought I would join a diabetes site. But, 10 years after my diagnosis, the social networks transformed the way I thought about the disease and helped me accept it. Hopefully your journey will be shorter; I’m pretty stubborn sometimes.
2. Ask questions of your doctors. Don’t be afraid to ask “why” as many times as you need, to grasp the treatment plan.Doctors are there to help us. We employ them. If your instincts don’t agree with the plan, don’t be afraid to switch to a new doctor who shares your vision.
3. Research. Research everything. Look at the side effects and seek to understand as much as you possibly can handle. The more you understand, the more empowered you will feel.
4. Know that every diabetic’s story is different. Everybody deals with the disease slightly differently. There is no one right answer, so be prepared to experiment with different methods. A little bit of this and a little bit of that. Don’t allow other people with diabetes to bully you. We are all hopefully striving to share, not compare.
5. When you feel more in control, take a vacation with your family and relax. The diagnosis will turn your world upside down and test you in ways you’ve never imagined. Take time to sit and learn to be at peace again.
6. Re-join the “living” as soon as you feel you’re ready. Emotional support comes from family, friends, therapists. Your being happy will actually help your child’s health. The hormones released from happiness actually help stabilize glucose readings.
7. Accept that when you’re doing the best that you can do, it is enough. Every day you can strive to be better. And that’s really enough.
When I was diagnosed as a young teenager, everything around me stopped for a number of years. I had trouble focusing on my studies, spending time with my friends, communicating what I was feeling to anyone. I was afraid of just about everything and I even let those fears overtake my life for awhile. But, I did learn how to handle this disease and to lead a basically normal life. I may even be more successful than I would’ve been if I hadn’t been diagnosed.
The fear managed to push me out of my comfort zone, which helped me learn how to cope in many stressful situations. Every person deals with stresses, so it is a great tool to swing about when living any life. The struggles taught me how to triumph in burdens I never thought I could’ve handled beforehand. I taught myself how to research when I didn’t feel my doctors fully understood all of my options for treatment. I learned how to speak my mind when necessary, partly because I was facing horrible health crises on a daily basis.
Diabetes helped me become an empowered woman by forcing me to face nightmares I typically would have ignored. I learned a lot about myself and what I can handle emotionally, mentally, physically. The complications from diabetes forced me to push back harder, to become stronger. I tested my limits in nearly every area of my life, and now feel I have a clearer idea of myself as a whole.
Sometimes I hate to admit it, but my diabetes diagnosis contributed largely to the person I am today. I am strong, brave; I’m a survivor. And everything is going to be okay.
Katherine Marple was diagnosed with type 1 diabetes at age 14 in 1998. She is the mother of two small children, has battled insulin resistance, Pre Eclampsia, CGM and pump failures, leading to insulin therapy via MDI using Levemir & Apidra and sometimes Metformin. She is the author of two diabetes related novels: “Wretched (this is my sorry)” and “Deathly Sweet”, amongst others.