When Kelli Deferme was diagnosed with type 1 diabetes (T1D) at age 18, she imagined right away what she’d encounter out in her world: a sea of compassionate people wanting to learn, ready and willing to understand and support her in this new diabetes life.
What she found, however, was often quite different.
Instead of compassion, she found judgment. Rather than openness to learn, she came across people who’d already made an (incorrect) assessment on why she’d been diagnosed. Even in a doctor’s office, she found shame and pressure — pressure that eventually guided her into the clutches of a full-blown eating disorder.
“I had to go to the dermatologist for something and without even looking at me or my chart after I mentioned diabetes, that doctor said, ‘Huh! I bet if you just lost 20 pounds, you’d not have diabetes.’ Now, I know this is not true, but it was the beginning. That comment was the trigger, the detonation of the powder keg that was my eating disorder,” Colorado-based Deferme told DiabetesMine.
Years later, she’s doing well and has adapted to life with diabetes as well as found a way out of the darkness of her eating disorder.
But she still sees — everywhere — the main ingredient that she feels makes life with diabetes extra challenging: Toxic relationships.
“Diabetes is such a negative stigma,” she said. “We judge ourselves, and then when the whole world seems willing to blame us (for having it), well, it can mess with your head.”
Toxic relationships are not unique to diabetes life. But the way a toxic relationship can impact the life of a person with diabetes is.
“Toxic relationships and the stressors around them can certainly have a greater impact on people with diabetes,” says Mark Heyman, PhD, a diabetes care and education specialist, diabetes psychologist, and founder and director of the Center for Diabetes and Mental Health in San Diego. Dr. Heyman also lives with T1D himself.
“It’s a stress response,” he says. “The body reacts with fight or flight, and no matter which your body chooses, that releases cortisol, which unfortunately elevates blood sugars.”
One cruel comment (“If only you’d eaten right, you wouldn’t have to deal with this!”) can spike blood sugars short term. Something stressful and impactful like a bad breakup, a boss who thinks you are full of baloney about all this, or even a parent who over-controls a teen or young adult can lead to stress-related higher blood sugars for longer periods of time.
Toxic relationships can impact diabetes another way as well: by leading those with diabetes to hide their condition, battle against it, and sometimes worse, stopping what needs to be done for a healthy life.
“When a toxic person pushes their views on a person with diabetes, it can lead the person with diabetes to push their diabetes needs aside,” Heyman tells DiabetesMine.
Toxicity can impact choices that seem commonplace too, he says. Like the employee whose boss pokes fun at diabetes. That employee may choose to only do diabetes care in private (and thus often just skip things they should be doing) or not take time out at work when needed.
And those with friends who either act as “food police,” give false information on treatments and cures, or pressure a person with diabetes to not make the best choices? They, too, can lead a person to skip necessary steps in their day or to not speak up when they need help, for example, if their blood sugar dips low.
The combination of not doing what you need to and having stress trigger higher blood sugars, can be quite damaging in the long term, Heyman says.
So what’s a person with diabetes to do?
Experts say this: Know who the toxic people may be in your life. And then either help them shift their actions or cut ties with them and move on.
Toxicity can come from just about any angle. From inside your family or relationship. At work or school (coworkers, teachers, bosses, and more). In medical offices. Strangers on the bus who spot an insulin pump and feel the need to “help.” The parent convinced their teen or young adult child cannot do diabetes on their own. And yes: Your very own self.
For Dana Klint, an adult with T1D who was diagnosed at age 8, a lifetime of being open and semi-casual about her diabetes care dissipated when she fell in love with and married a man whose toxicity around diabetes changed her.
“He wanted nothing to do with my diabetes,” she says. “There was always this underlying tension.”
But Klint pushed it aside, thinking love could heal all. Instead of pushing back or explaining her needs, she adapted to his grievances, even looking the other way when — should she be upset about something — he called her “dia-biligerant.”
“I’ve always been the type to just pull out my glucometer and check,” she says. “But I wanted to be the good wife.”
So she started checking in the bathroom when they were out, in the bedroom at home. In time, that led to not checking at all, or waiting to bolus after a meal and then forgetting. Her A1C “skyrocketed,” she says, and she even landed in the hospital in diabetic ketoacidosis (DKA).
She turned to counseling and began to realize that perhaps it wasn’t her diabetes that needed to hide or change. Before she took action, and while she was digging deep to achieve better daily care goals again, her husband made an announcement: He just couldn’t be “married to diabetes” anymore.
“I realized then that he saw diabetes as my whole identity,” she says. Two days later she had separation papers filled out. Today she’s single, strong, and better at seeing — and taking action about — toxic relationships.
“Now I am back on a pump and pulling things out on the table and doing what I need to wherever I am, and whenever I need it. Just like that girl I was,” she says.
There are also those who, unlike her ex, are well-intentioned but perhaps misguided with their advice or actions, not realizing they may be harming rather than helping.
Teens and young adults who oft are ready to work at independence can come up against this from a most surprising place: their loving, caring parents.
Heyman identifies toxic relationships in regard to diabetes as those that “cross boundaries” — boundaries that should be set by the person with diabetes and respected by those around them.
Parents can be challenged by that, and the outcome can be negative.
“Some are helicopter parents,” he says.
“If you are 25 years old and your parent is still following you and calling when you are high or low (unless you have asked them to), I would characterize that is as crossing that boundary.”
This includes college-aged people with diabetes who may want to go at their diabetes on their own. Parents who either cannot or will not respect that can sow seeds of stress and angst in their child, not only leading to stress-induced higher blood sugars, but possibly breaking down an important relationship, he says.
And then there is that one person whom you actually can change, albeit with a lot of hard work: Yourself.
“Self can be the most common toxic relationship of all,” says Carrie Swift, a certified diabetes care and education specialist and quality coordinator at Kadlec Regional Medical Center in Richland, Washington.
“And it’s not like you can take a full vacation from your diabetes,” she tells DiabetesMine.
Toxic self-relationship can look like the judgment inside your head — “I’m always doing this wrong!” “I’m high again how can I not get this right?” and even worse, “Why bother? I stink at this.” — and can be challenging to overcome, particularly if other toxic relationships are boosting it up, Swift explains.
It’s not always easy to change behaviors, nor can you always simply cut someone out of your life.
Swift works with her clients on what she calls the “Four A’s:” Avoid, adapt, alter, and accept.
Take, for example, a somewhat-to-very-toxic relationship nearly every person with diabetes comes across: The so-called food police, who think they know best what a person with diabetes should or shouldn’t eat.
“I don’t think anyone can get away from that,” she says.
Swift suggests that rather than get angry or snap, you practice “reframing” the situation. She calls them “I messages,” a way to shift the possible conflict away from the person bringing you the stress.
For instance, she says, if a person questions you every time you, say, savor a treat (and bolus for it, or not) and the person lectures you, you can approach them like this:
“When you (fill in the blank) I feel like (tell them how you feel). If you would instead (fill in the blank with a better thing for you for the person to do or say), I’d be glad.”
In other words, rather than just be angry, Swift says, “You have to give them the ‘instead’ so they can understand and hopefully choose a better action next time.”
That action would fall under adapt or alter: Once you see how they respond over time, you can move to accept their new behavior or simply avoid them, she says.
In the doctor’s office, Swift says, “We all need to be advocates for ourselves,” and not feel bad questioning or pushing back on medical experts.
If you do not like how things are being handled with any medical person, she says, “You can ask them to change.”
As for teens and young adults who may feel their parents are overstepping?
“Communication with a parent around this can be tough at that age,” she says.
“Give them ‘teachable moments.’ Point out the times you do things right — while reminding them that no one is perfect in diabetes care. Communicate that you not only want to do it, but you can do it.”
In all these cases, she suggests practicing by role-playing with your diabetes educator, something she does with patients often.
Heyman suggests focusing on boundaries. Decide, in each relationship, where they are and what they are, and then communicate those “to help people do what you want and not do what you don’t want.”
“People often think they are being helpful when the reality is, they are not. Giving them firm but polite feedback on how what they say and do may impact you helps that,” he says.
Then see how it goes.
“Does the person respond? If they do not, then maybe they are not the best person to have in your life right then,” Heyman concludes.
For Klint, divorce was the solution. But she is all about trying to work these things out, and being understanding when people are making an effort.
“I don’t think you need a perfect person when it comes to diabetes,” she says.
She advises not to make a relationship decision either way based solely on diabetes. In other words, choosing to couple with someone because they are good at diabetes alone is not enough either.
Deferme’s advice? Work on your relationship with yourself first, and then you’ll be better equipped to help others adapt to what you need in this diabetes life.
“Arm yourself with information,” she says. “The diabetes community is such a wealth of information and support. Find a buddy out there who gets all this and helps you learn to cope with those who do not. It will change everything.”
Even then, she says, be careful that you find someone who is a positive influence.
“Because if you end up with someone obsessed with numbers, well, my identity is not solely tied to diabetes or my numbers,” she says. “I had to find others who wanted to live the way I want to.”
Fortunately, she has and is. Not that the potential for toxicity ever goes away. She’s just ready for it now, she says.
“The whole world has opinions on your private and unique health, and they all want to share it,” she says. “You have to build up your knowledge and confidence, and it’s worth it.”