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When I was first diagnosed with type 1 diabetes, someone said brightly to me, "Well, at least you don't have cancer!" Others told me with naïve confidence, "You can beat this thing!" Another person remarked to my mother, "If anyone could do a good job with diabetes, it's Rachel! I'm too scared of needles." Not one of these comments, nor about ninety percent of the others I received, was helpful, encouraging, or beneficial.
While in the hospital for five days following my diagnosis, I received dozens of get well cards. Though their landscaped illustrations and well wishes were meant to encourage me, they did the exact opposite. I knew I wouldn't ever "get well" from diabetes. My disease has no cure. In fact, the brochures told me that if I weren't a perfect patient, I could expect to face the potential of blindness, limb amputation, heart problems, kidney failure, depression, sexual dysfunction, and much more. It wasn't as if I had had my tonsils removed and would spend a few days eating popsicles and watching movies before I would quickly recover and rejoin the real world.
Flowers were even worse. First, I'm allergic. Second, flowers are for funerals in my opinion. Third, they were a reminder of the world outside my hospital window that was carrying on as if nothing were wrong, while I lay hooked up to monitors and IVs, thinking about what the rest of my life looked like.
I realize that I was very angry at the time, and I believe that my well-wishers had good intentions. Most people just don't know what to do when a diagnosis occurs, so they often default to a card, a bouquet of lilies, or an offhand comment.
I believe that it's important to reflect on our diabetes journey and discover the lessons that were laid out for us after we were diagnosed. This concept has been on my mind a lot lately for one reason: Several people I know are facing a diagnosis. And I'm trying to figure out what the heck to do for them.
For example, a fellow adoptive mother of my acquaintance recently found out that her breast cancer has returned. On her Facebook page is a slew of messages, many of which say, "Let us know what we can do" followed by a smiley face. I find this type of message incredibly unhelpful. It's as if to say, "I don't really know what to do or say, and, in fact, I don't have time for you, but if I pretend to offer to be there, perhaps that will suffice." Instead, why aren't these people offering to babysit her son, bring pizza over, or escort her to a doctor's appointment?
When I arrived home from the hospital, I needed supervision and guidance. I was weak, exhausted, and mentally foggy. My mother-in-law took me to the grocery store and helped me read labels as I filled my cart with diabetes-friendly foods. She then helped me bake my first batch of cookies, all carefully measured and calculated. These two acts of kindness were not only practical, but very much appreciated. She helped me address needs and took it upon herself to learn right along with me.
My cousin, a father, husband, and professional salesperson, was diagnosed a few weeks ago with lymphoma. He lives three hundred miles from me, and honestly, I haven't decided what to do for him. A "get well" card seems insulting, a phone call might invade his privacy and be incredibly awkward, and a gift card for delivery pizza seems too simple. I'm considering writing him a letter of support that he can digest when or if he is ever ready.
My mother did the same for me. Throughout my diabetes journey, which has now been four years, she's sent me encouraging letters. I have appreciated these letters for a few reasons. One, I can process a letter in the peace and quiet of my home instead of facing a person who expects some sort of immediate response (crying? confession? thankfulness?). Two, these letters have come weeks, months, and years after my diagnosis. The majority of my "support" came within two weeks of my hospital stay. After that, my diabetes, which is with me forever, was ignored or forgotten.
A friend of mine who has multiple sclerosis is much like me. We are independent and confident in our diseases, or at least we appear to be. If someone leans in too close and whispers, "Are you OK?" or "How are you doing?" with their eyes wide open, we get annoyed. Although the person believes he or she is being sincere and helpful, the truth is, most coping is a solo journey and, oftentimes, a private journey. To know that others believe we need their pity, overabundant concern, or invasive and impromptu therapy sessions interferes with our process and progress.
What do you say and what do you do when someone you know learns of a life-altering diagnosis? I encourage you to consider the person's immediate needs and personality. Is a "get well" card really appropriate? Would flowers truly be appreciated over the offer to bring over a homemade meal? Is a "Go forth and beat cancer" comment more comforting than an evening of watching a sports game on television or a visit to the local coffee shop? Consider your own situation, and remember the day you were told that you had diabetes. What did people do or not do for you? What did you appreciate? What were you told that was discouraging?
When people have been informed that their life is about to drastically change, it is crucial to help them feel that they can deal with their diagnosis as they see fit. They aren't required to enjoy get well cards, sniff carefully arranged bouquets, or tearfully confess all of their fears at the drop of hat when asked, "How are you?" Each person and each diagnosis is different, and supporters should be equally unique in their responses. A little of your time and creative energy can go a long way with someone who is facing a daunting medical unknown and a crowd of status quo supporters who are here today, gone tomorrow.
18 comments - Apr 5, 2010
Diabetes Health is the essential resource for people living with diabetes- both newly diagnosed and experienced as well as the professionals who care for them. We provide balanced expert news and information on living healthfully with diabetes. Each issue includes cutting-edge editorial coverage of new products, research, treatment options, and meaningful lifestyle issues.