People are instinctual problem-solvers. When we hear that someone we know is facing a hardship, we want to solve it, partly out of genuine care for the other person, and partly because most people just can’t stand the idea of an unsolved problem. When the problem is a chronic health condition such as diabetes, however, all sorts of short circuits can occur in our problem-solving brains: “What do you mean there’s no cure? Have you tried…?”
For those who must live day to day with diabetes, the phase of searching for magic bullets may last for a while, but eventually acceptance must set in if life is to have any sense of normalcy again. Adjusting to any difficult situation tends to follow this same trajectory, with feelings of denial and resistance giving way to feelings of acceptance and making peace with the situation.
Conflict can arise, however, when friends, family members, and other acquaintances are at a stage of needing to solve a loved one’s diabetes, while the person who has the diabetes is at a stage of accepting and learning to live with the condition. Such conflict can be annoying and even downright infuriating at times, both for those who want to help, and for those on the receiving end of unsolicited advice and solutions.
This can’t be right!
The first stage of adjusting to bad news (and a diagnosis of diabetes is certainly a piece of bad news) is often denial. There is a feeling of disbelief, disconnect, and unreality. That initial feeling was summed up quite simply and quite eloquently by a parent I talked to a while ago. She recalled the moment when her son was given a diagnosis of Type 1 diabetes following a routine checkup. “I had this feeling of disbelief, and my first thought was to ask to see the script,” she said. “In my own head, the doctor was simply wrong. We weren’t supposed to get diabetes. Someone had just made an error in the script.”
For this family, the initial stage of denial was followed by a relatively quick shift into acceptance as they learned about insulin, meal-planning, blood glucose monitoring, and all the other changes that come along with a Type 1 diabetes diagnosis. “Of course there were challenges, and of course we felt upset, angry, sad, and all of that,” she said, “but we understood quickly that denial wasn’t going to be helpful in the long run.”
Not all families make this adjustment as quickly, however. And when the family holds on to intense denial or resistance while the individual with diabetes is attempting to learn how to live with the condition, conflict can erupt. I recently spoke with Jennifer, a mother of a three-year-old daughter recently diagnosed with Type 1 diabetes. Jennifer and her daughter come from a very close, very caring, and very religious family. Jennifer held the same values as her family, and she explained that her faith had been a strong sustaining factor for her and her husband as they faced their daughter’s diagnosis. However, her own faith and her extended family’s faith were pulling in opposing directions.
Jennifer’s family remained steadfast in their conviction that her daughter’s diabetes could be “defeated” through prayer. Day after day, week after week, her family continued to insist that with enough prayer, enough faith, and enough persistence, God would remove diabetes from her daughter’s life. Jennifer said that she felt almost “torn in two” trying to balance her and her daughter’s need to accept the reality of what was going on, while constantly hearing members of her family insist that “God will take it away.” Her own faith remained quite strong, and she did use prayer. However, she used it to move toward acceptance, while her family continued to resist the diabetes diagnosis.
After two or three months, Jennifer finally had to sit her family down and explain to them how their well-intentioned mantra of spiritually curing diabetes was making it almost impossible for her and her daughter to live with diabetes. After this conversation, the tension subsided, and the family was able to come together in helping her daughter live a full and happy life. Moreover, the family’s strong faith transformed from an obstacle standing in the way of accepting diabetes into an incredible tool for supporting one another and facing the daily challenges involved in managing the condition.
That conversation is a great example of how to address this kind of situation: Be direct, be thankful for the good intentions of the people who are trying to help, but be firm in stating your own needs and asking to be supported in the way you need to be supported.
For any family members, friends, and concerned acquaintances who are reading this, it’s important to realize that part of what is driving your resistance is your own anxiety. So before you mount an all-out offensive against diabetes, take a moment to reflect on how you’re feeling about your friend or relative having diabetes. You’re probably nervous and possibly scared or angry. If that’s the case, take some time to process your feelings, and work on coming to terms with your loved one having diabetes the same way he has had to come to terms with it.
Undiscovered, covered-up cures
I grew up in Boulder, Colorado, home to one of the largest communities of alternative medical practitioners anywhere in the United States. There are more acupuncturists in Boulder than there are mechanics. McDonald’s is the only place I know of that doesn’t use free-range, organic meat in their burgers. Everyone hikes, half of the population is vegan, and smoking is only allowed outside the city limits (OK, that last one is a joke, but it was the first city to enact a smoking ban in bars and other public places). It’s a very progressive place.
My family has a long history of using alternative medicine approaches, such as acupuncture, herbal supplements, and shiatsu massage, to name a few. And, like most people, we appreciate them for what they are. Though they are usually referred to as “alternative” medicine, the more appropriate term might be “additional” medicine. Acupuncture can do many things, but when it comes to diabetes (and many other conditions), it cannot replace Western medical treatment. Once your insulin-producing islet cells are gone, they’re gone. It’s too late for a preventive approach; it’s time for Western medical science to step and do what it does best.
Many of my concerned and well-intentioned friends and acquaintances (including a number of alternative medicine practitioners) failed to understand this distinction, however, and a great deal of unsolicited and sometimes dangerous advice came from this lack of understanding. I have no doubt that many people with diabetes have received this same type of advice, which I call “covered-up cures” advice, because it always sounds like one of those late-night infomercials where someone is trying to sell a book of cures that “‘they’ (whoever ‘they’ are) don’t want you to know about!”
I’ve been told I need to start eating nothing but wheat germ. I’ve been told that if I take 15 daily supplements and stop taking insulin, within three days I won’t have diabetes any more. I’ve been told that switching to purified water from a particular spring in the Alps will cure my condition. I’ve been told that if I reach a deep-enough state of meditative concentration, my diabetes will simply go away.
All of this advice has come from people who sincerely wanted to help. But when help is offered without a thorough understanding of the medical realities of diabetes, it not only fails to be helpful, it can be detrimental. Imagine if someone took the advice of not taking their insulin for three days with the expectation of being cured. Such advice could be downright fatal.
The way to handle this kind of advice can vary depending on who is giving it. But a few fundamental rules apply. First and foremost, remember that no suggestion should be taken up without a conversation with your doctor. Simply responding with a friendly but firm, “Thank you for the advice, but I really need to talk to my doctor before I do anything like that” can be a good start. For casual acquaintances and people you won’t regularly see, that may be all you need to say. For close friends and family members who offer this kind of advice regularly, a more in-depth conversation may need to take place. Start with a sincere “thank you” for the well-intentioned advice, and then use it as an opportunity to educate your would-be helper a little. You can explain how insulin works, how you calculate carbohydrates for each meal and snack, how your blood glucose monitoring fits in with how you eat, and other details about how your diabetes really works.
For any readers who are inclined to offer this kind of advice to others, here are a few fundamental rules to follow:
1. Never suggest a regimen which asks a person with diabetes to change or stop his current medical course of treatment.
2. Take the time to research what you are suggesting, and learn about what diabetes is before you look into any kind of treatment suggestion.
3. Understand that alternative methods, diets, and other treatments should always be seen as something to be done in addition to standard medical treatment. They should never interfere with or replace that standard treatment.
4. Lastly, understand that someone who has diabetes should never undertake medical treatment of any kind without talking to his health-care team first, so don’t expect your friend or acquaintance to take up any suggestion right away.
No, no, Bob; He’s diabetic…
It is not uncommon for people with diabetes to receive diabetes-related advice that crosses the line from helpful to overbearing. What do you do when you’ve taken insulin for a reasonable dessert, your blood glucose isn’t high, you calculated the carbohydrate for the dessert, you know it’s OK to eat, and you are assailed with scrutiny, concern, and advice from others at the table, along the lines of “Oh, you can’t have that; it has sugar in it!” or “Are you sure you don’t want me to get you some diet pudding?”
This kind of advice can be very irritating. It can feel intrusive, judgmental, and, above all, belittling. As an adult, you are free to make your own choices, and having diabetes does not change that. When you’re living with a serious chronic medical condition, your friends and family will be concerned for your health and welfare, but that doesn’t mean you should not be entitled to make your own choices.
Your best option for confronting this is a direct, honest conversation. You probably won’t receive a lot of this kind of advice from strangers or people you’re meeting for the first time at a party. It’s not like you wear a sign that says “Diabetic,” and your opening line of conversations probably isn’t, “Hi, I’m John and I’m diabetic.” So this is a conversation you’ll most likely be having with friends and family. As always, start by thanking them for their support (even if they’re going a little overboard with it). Make sure they understand that you are not rejecting them as people, but simply want to address how they can be supportive in a way that is helpful for you. They may need a bit of education on what diabetes is and what it means to live with it on a day-to-day basis. They may need some guidance about what they can do to be helpful. The most important thing to remember during this conversation is to address the specific behaviors that are bothering you without making accusations or hurtful remarks.
Now, there may be times when you need to be a bit firmer. Remember that if someone is really being intrusive, you are entitled to draw the line and request that he allow you to make your own choices as a free and intelligent adult. You probably won’t need to put your foot down like this for most people, but remember you have the right to ask for what you need from the people you love.
Separate the advice from the person
As a person with diabetes, you are all but guaranteed to get some unsolicited advice. I urge you to remember two things. The first is that the people offering you their advice really are trying to be helpful. So take issue with the advice, but not the person. The second thing to remember is that a direct conversation is almost always the best route to changed behavior when unsolicited advice is bothering you or working against your efforts to effectively manage the physical or emotional toll of living with diabetes.
Don’t let resentment build quietly until you finally blow up at Aunt Betty in front of everyone at the dinner party because she gave you some diet pudding instead of the cake she gave everyone else. Find a time to sit down alone with her, and explain how you manage your diabetes and how you plan for special desserts like her delicious cake. This is a golden opportunity to provide some education, and other folks with diabetes who attend your Aunt Betty’s dinner parties in the future will thank you for it, too.