The Monkey on Your Back

When you’re first diagnosed with Type 1 Diabetes, the thing that sounds hard is the shots -- all those needles.  There’s the checking your sugar multiple times a day, not to mention dosing for each meal and snack and taking that shot for your daily long-acting insulin.  You count the number of pokes you’ll need and it feels overwhelming and painful.

But most people with T1D adjust to the shots.  Some switch to a pump.  Those with cooperative insurance may a CGM.  The number of sticks a day may go down.  They may not.  You may decide to stick with multiple injections a day -- and have no problem dosing for that extra snack. Either way, as you go on with your life with Type 1, it’s not no longer the pokes that are hard.  It’s just the managing.  The straight-up roller coaster of blood sugars.  The syndrome of did-the-same-thing-got-a-different-result.  It’s that you can never get it quite right.  In our house -- with two kids with Type 1 -- we sigh and remind ourselves that it’s an art, not a science.  The bottom line is none of us can never be sure of the results we’re going to get, despite our best efforts.  

But here’s the real catch:  The job is invisible to most people.  Very few folks will understand how much extra work is required for you to get to the starting line of each and every day:  How you have to think through every possible emergency and make sure you have enough supplies before you leave the house; how you might have lost sleep the night before because of a low or pump failure, but have to be to work or school on time, nonetheless; how you might feel off-kilter in the morning because something you ate the night before has you still running high.  One person described it to me as the monkey on her back -- always there, always annoying, always chattering.  
When you live life with an invisible disability like Type 1, it’s important to have strong allies.  Maybe the folks you live with or your family really get it.  If they do, then they know how much work your management is: They can listen to your woes or pitch in with small assistances, like helping you pack up your supplies in the morning.  Some of the best allies are those folks who are living with their own personal monkey as well -- other people with Type 1.  Sure, all your experiences won’t be the same, but it’s amazing how relieved most folks feel when they can code shift into diabetes-speak and share the day-to-day difficulties they experience.  And if you’re feeling like that monkey on your back is really impacting you, causing you to feel depressed or anxious or impacting your diabetes management in a way that’s making it hard to live your life fully and effectively, it might be time to reach out and get some professional help.  I’d be happy to hear from you:  If you think it’s time to reach out to a therapist, please call me at 510-708-4636 or send me a message.  

Lending Strength

Here’s a scenario:  Your daughter, a junior in high school, is late for school and is insisting that she can’t enter the classroom because everyone will look at her and assume that she did something wrong.  She’s having a crying fit, saying that you have to let her miss the whole day at school, or at least let her wait to go to school until it’s a passing period or a recess.  Here’s another: Your son, a good student and something of a perfectionist, is insisting that he’s sick with a stomachache.  But the truth is that the English teacher moved a test forward, leaving him with less time to study; you suspect he’s anxious about failing -- or not doing as well as he normally does.  And a third:  Your middle school girl is struggling at school because the crowd she always used to hang with has turned against her and she finds that she’s alone at lunch.  There are other kids she could connect with but they all feel like misfits to her -- plus she’s anxious about reaching out to new kids, given that the old ones have rejected her.  And a final one:  Your son, who loves computer science, applied for a special after-school program that you know he’s really qualified for and would love.  But when the acceptance list is posted, to your amazement, you find that he hasn’t made the cut.  He says he’s okay, but has hunkered down in his room and isn’t talking to anyone.  

At first glance, these situations don’t really have a lot in common, unless you count that they’re all about the difficulties of being a teen.  But scratch the surface a little and you’ll see some surprising similarities.

Try this: Imagine that the kids in these scenarios aren’t teens.  Make them younger -- 10 maybe, or 8.  What happens?  The situations often become something where you intervene:  You talk to the teacher about the lateness or explain that little Johnny really needs an extra day to prepare for that test.  You go to the school to talk about social dynamics in the class or you call the program to find out what happened and why Sam wasn’t accepted.

Except that as your kid gets older, you can -- and should -- get involved less and less, or not at all.  But what happens to your child?  And the anxiety or disappointment or fear that they feel in these kinds of situations?  Do you leave him or her alone with the feelings as well?

Not at all.  You can’t fix situations for your kids, but you can do something even more important, something I call “lending them your strength”.  Here’s a big secret of parenting:  They have trouble believing that they can succeed if you can’t imagine it for them.  So you show it to them through your eyes.  Take our girl who’s melting down about the social disaster she imagines from being late:  “I know, Sally, that you’re worried what people will think, but I have confidence that it will be okay and your lateness isn’t ultimately a big thing.  Go ahead and pack up your books so I can take you to school.”  Note that you both help her imagine that she’ll be okay and insist that she move through the difficulty, rather than around it.  After all, if we let them slide away from experiences that are tough for them, not only will they never learn how to manage them, but they also will get the message that you, too, think that this kind of situation is so scary that they can’t manage it -- not at all the message you want to give.  Let’s think about our boy who’s afraid of failing: “I can feel how scared you are that you won’t do well on this test.  I have faith that you’re as prepared as you need to be.  And it’s nothing to miss school over.  Go ahead and pack up your books....”

Of course you can brainstorm with them how to make things easier.  If she’s willing, role play with your daughter how she might approach a new friend and talk to her about popularity and what friendship means.  Perhaps you can talk to your son about the importance of failure -- and of picking himself up and trying again.  Ask them what’s one thing they could do that might make it feel easier for them and what they think will happen if they try that.  But remember that even if they don’t want to hear from you, that’s okay too.  You are doing something to help when you believe that they have the skills to work it out for themselves -- and when you gently insist that they do. Remember how these difficult moments in your life helped shape you into the strong adult you are today.  And lend them that strength so they can grow into the strong adult you know they can become.  

Why FBT

So, first let’s start with the premise of FBT, or Family Based Therapy.  It’s a model designed to support parents in refeeding their starving anorexic teens.  The basic idea:  The parents decide what the teens should eat, put it in front of them, and the teens eat it.  

Of course, it’s not that simple, nowhere near.  Teens don’t generally make a habit of doing what it is that their parents tell them.  And anorexic teens are particular adverse, since ultimately this means that they have to eat all kinds of foods and quantities of foods that make them extremely uncomfortable and are in direct conflict with what their anorexia is telling them to do.

But there’s this additional confounding factor, especially as a therapist:  People often think that FBT strips teens of their autonomy, a hallmark of what many think therapy is supposed to promote.  After all, isn’t that what many therapists tout?  Finding your voice?  Exploring your self?  This feels like just the opposite.  That I am promoting some form of teen torture, that in allowing -- nay, supporting! -- parents in this endeavor, that I’m also somehow eliminating the rights of the teen.  And let’s face it, FBT is not always pretty:  Parents can have pretty big face offs with their kids, with kids throwing food, or sobbing on the floor, overtaken by their anorexia and desperate -- desperate -- to not have to eat what they’re given.  So, a lot of therapists think that they shouldn’t have to.  That the disease is simply a manifestation of a problem with the child’s relationship with the parents and should be treated as that, instead of giving even more power to the parents.

But here’s the way I see it:  Imagine you have a three-year old, a really responsible, sweet, listening kid, who always knows to stand next to you when you cross the street.  So you let her do just that, and don’t insist that she hold your hand.  But if that same sweet three year old suddenly turned a little wild and ran out into traffic, you would rewind the clock (after you calm down, that is.)  You would insist that your little sweetie hold your hand again to cross the street until you’re sure -- absolutely sure -- that she understands the importance of the safety issue of staying close.  Feeding and eating is really no different.  If your teen (or younger child) can’t make good decisions about food and eating, she’s not safe any more, as evidenced -- among other things -- by the high mortality rate of anorexia.  And with anorexia, there’s an additional catch: A starved brain actually can’t make good decisions.  In fact, the research is pretty clear that a starved brain has a really hard time deciding to feed itself.  

So, do I believe in growing autonomy for teens?  A resounding ‘Yes”!  But I also believe that as parents we sometimes shoulder the burden of setting difficult limits for our kids.  For some parents, it’s making the tough decisions about curtailing freedoms when they find their teen has broken house rules and values about the car or drinking or sex.  For some, it’s taking away the phone or setting limits around social activities.  These limits let kids know that you’re in charge, something that ultimately isn’t punishing (although it certainly can feel that way to both the parent and child) but that allows kids to feel that their world is safe and that they can trust you to be watching out for them.  And even though these consequences sometimes feel harsh, they should always be delivered with love and compassion.  Really, it’s no different with anorexia:  Until parents of kids with this ugly disease can trust that their children can make appropriate food choices, it’s up to them to create the structure that will provide safety and -- ultimately -- healing.  Refeeding isn’t a lifetime sentence for a teen; if all goes smoothly, it’s a way station on the track to wellness.  

Effortless Perfectionism

Life is rough for teens today, and particularly for girls.  Kids believe that they have to get all As, have a full plate of extracurriculars -- along with a bustling social-media feed -- and look fabulous while they do it all.  What’s more, they have to appear that they’re doing it without breaking a sweat, cultivating a kind of effortless perfectionism that insures that no one knows how tough it is for them to hold it all together.  No wonder teens have record-high levels of depression and anxiety.  While it might be possible to juggle all this for a short period of time, it’s an impossible task to continually pull it off.  

I believe that this problem of effortless perfectionism plagues women as well:  We often buy into the hype about all the different things we’re supposed to be, the multiple roles we should play.  Mothers and career women.  Committed volunteers and passionate partners.  We are egged on by everyone else’s Facebook page -- all those glossy photos showing fabulous family outings and well-dressed kids.  Not unlike our younger generation, we think we should do more and more and do it better and better.  

An ugly side-effect of this dilemma is that -- in an age of hyper connection -- we ironically often feel more alone.  Comparing our insides -- messy, untamed places -- with other people’s outsides is a losing proposition.  We all have voices that tell us the things that we’re not good at, the ways that we fail.  It doesn’t look that good when we’re comparing ourselves to these perfect-seeming acquaintances in our lives. And when we’re busy feeling inadequate, we feel too vulnerable to open up about our struggles.  No wonder that life feels less connected and people often feel depressed.

Seems like today’s women could go a long way towards helping today’s girls, just by thoughtfully role-modeling what’s truly important.  We have to be brave pioneers in tossing aside the idea of effortless perfectionism.  Of course exposing our imperfections is a risk, but embracing our true selves -- flaws and all -- is a kind of liberation.  The remedy?  Looking inward and slowing down.  Appreciating our strengths, instead ofover-focusing on our flaws.  Ask yourself what really matters and turn your sights to that.  What I know -- from the research, from observing it in my practice and by living it in my life -- is that meaningful human connection makes a difference.  Connecting with friends, laughing with your kids, taking a walk with your partner.  If you think it’s time to talk to a therapist about these issues, I would love to hear from you:  Call at 510-708-4636 or send me a message.

Whose Diagnosis Is This Anyway? The Impact of Type 1 on Parents

There’s no room at the ER; It’s one of those high-volume moments, so we’re sitting on a gurney in the bustling hallway.  The doctor is talking in a calm voice, despite the swirling hubbub.  

“The good news,” she tells my nine-year-old son, as though about to pronounce the victory of a beloved team in the World Series, “is that you will be able to live a totally normal life.  Your mother is smart and educated, “ she nods at me and I fleetingly wonder how she can know such a thing. “She will help you.  You’ll be able to do anything you want.”  

Type 1 Diabetes is no longer the death sentence that it once was, far from it.  Sure, there was the life-saving discovery of insulin in 1921, but since that time -- and even since the days when I watched my father give daily injections -- there’s a dizzying array of technological “solutions” to the problem of managing diabetes, from a sizable number of insulin pumps to choose from; to continuous glucose monitoring, which provides 24/7 readings of blood sugar; to the widely anticipated “artificial pancreas” which will take some of the guesswork out of the equation of blood sugar management.  In the end, that means that, for folks diagnosed after 1979, they will likely live as long as their non-diabetic counterparts.  And the risk of complications -- all those scary conditions like blindness and limb loss and kidney failure -- while still possible, are significantly reduced.

But that sure doesn’t make it easy.  

As a parent of a newly-diagnosed kid with Type 1, it starts with just figuring it all out.  “It’s like drinking out of a fire hose,” another parent sympathized when my family began this unexpected journey.  And it is.  First you take a crash course in a whole new language, one peppered with technical jargon -- bolus and basal and ketones and insulin-to-carb ratio.  And then, while getting yourself up to speed, you have to manage the distress of hurting your child -- multiple times a day -- with shots and finger sticks and insertion sets, not to mention the indignity of watching every bite of food that he eats.  

It gets better.  It does.  You become fluent in the language.  Your child starts to adjust to the number of sticks he has to suffer each day.  You develop the savant-like skill of knowing the carb count of everything you see.  You adjust.  It’s your new normal.

Except that it’s not.

Underneath all of busy hum of diabetes management is the tremendous loss:  The loss of your beautiful, perfect, healthy child.  The loss of the idea that you have the power to protect that child from harm.  The loss of community -- despite everyone’s best intentions, you often find that they just don’t understand your experience, saying hurtful things about how it’s not such a bad diagnosis or chastising your little guy for wanting a piece of birthday cake like everyone else. 

The research shows that parents of kids with Type 1 have increasing anxiety over time.  It’s like a slowly dawning understanding:  Sure, our kids will lead normal lives, but with a tremendous burden, one that initially is often shouldered by us and one that often takes us a while to fully understand.  They feel the blood sugar swings in their bodies, but if they are young enough, we are the ones who shoulder the tasks.  We’re happy to do it -- more than happy.  But it tires us.  And then we wonder how the kids will manage it, this monumental, but invisible job, this exacting job that can wake you in the night, interrupt a quiet movie, demand your attention at the most inopportune moment.  So, we worry.  And that wears us out even more.  

As you learn the language of Type 1 and it becomes just another chore in your life, it’s essential to find support and community to help heal the monumental hurt and loss of the diagnosis itself.  Find your people.  Join a group.  Pick a knowledgable therapist.  Share your sense of loss, your longing for normalcy, your anger.  Breathe.  Cry.  

Speak with others in the crazy foreign language of Type 1.  

Managing the Diabetes Police

You know who they are:  It’s your great uncle, who has the audacity to ask you what your last A1C is.  It’s your spouse who gives you that sideways look when you get up to help yourself to another serving of dessert.  It’s your mom who calls right in the middle of finals to see if you’ve been checking your sugar regularly since she’s noticed that you haven’t picked up a prescription refill on test strips in a while.

Ah, the Diabetes Police.  Those well-meaning folks who seem to make it a mission to “help” you with your diabetes management.  Not only is it just flat-out annoying to feel like you’re being micro-managed (“I’m an adult, already!”); it can also feel really isolating, like no one else gets what your experience is (“Everyone else gets to have lots of dessert at the holidays; I should too.  After all, that’s what insulin is for!”)

Take a breath.  After you’re done your (very legitimate) rant about the injustice of the way the Diabetes Police treat you, I’d like to suggest a few steps to help you manage these relationships in your life:  

First of all, remember that the likely reason folks are talking to you in this way isn’t to annoy or belittle.  It’s because they feel concerned.  It means that they care.  Taking that perspective may allow you approach them in a way that helps them let down their guard.  A good starter: “Hey I know that you must be really worried about me and that’s why you were xx....”  People are always in a better frame of mind to make a shift if they feel understood to begin with.

Next, ask them for a concrete behavioral change that they can make that will help you.  And keep it small.  I know that can sound frustrating, especially if you feel like your particular Diabetes Policeman is really micromanaging.  What you have to remember is that each small change will lay the groundwork for the next one.  But here’s the catch:  Expect to make some compromises on your end as well.  Remember that this is a relationship -- your relationship with diabetes, sure, but also your relationship with the loved ones in your life, who are often also affected by your diabetes. Here are a few suggestions:

“Next time there’s a holiday buffet, I’m going to plan to have lots of dessert, just like everyone else.  I’d like if you could hold on commenting on that when I’m serving myself.  But I’m happy to talk to you about dosing later, if that makes you feel more comfortable”

“My A1C feels like a personal number:  It’s kind of like asking me my weight!  I end up feeling really uncomfortable when you ask about it and would appreciate if we could talk about other things.”  

“When you ask about me checking my sugar, it makes me feel like you don’t trust that I’m managing my diabetes well.  I admit, though, that I have been struggling a little during finals.  Maybe I could think it through with you so I can get a sounding board for taking some better steps for self care.”  

And remember, if your relationship with the Diabetes Police is getting really stressful and contentious, it might be time to bring in a mediator.  It could be that it makes sense to have your Policeman join you at your next endocrinology appointment.  Or if it’s time for a therapist, reach out and call me at 510-708-4636 or send me a message. 

Parenting: A Delicate Balance

Dinner is done, piles of dishes flanking the sink.  The kids have been good about cleaning up for the last few nights, so I release them -- a vacation treat.  They head down to the beach, the three of them piling in the car together, my oldest at the wheel, my youngest asking to take her bike so her brothers can help her practice.

She’s still very wobbly on the bike, at that stage when she can balance and she can pedal and she can steer straight, but only just barely.  And her dad is tired of running along beside her in that stooped position, his back aching as he cheers her on, releasing the bike -- but still running behind her so she doesn’t know that she’s on her own.  Frankly, he’d rather do the dishes with me.

Besides, this is a special moment for these kids:  My oldest is heading out into the world, going away in just a few days to a five week music camp where he’ll play and play and play piano until the small muscles in his arm will pop out in a freak show, look-what-I-can-do kind of way.  

So, her oldest brother will help her bike.  She adores and trusts him.  He would never let her come to harm.  She knows this.  And he’s young enough that running while half folded over will do nothing but make his blood sugars go lower:  Like his younger sister, he has Type 1 Diabetes.

This is how I find them, in the parking lot of the beach, with my oldest running and running, holding the bike the whole way, my other son running alongside him, both of them cheering their sister on, telling her that she can do it.

But he never lets her go.

“You have to release the bike,” I point out.

“But she might fall,” he worries.

I’m confused.  Here I am, about to release him for five weeks.  Five weeks that he has to fully manage his diabetes on his own.  A young diabetic kid in a strange city.  It’s not that I don’t trust him -- I do.  He manages his blood sugars at school and I rarely, if ever, have to step in to help him.  He talks to his teachers about how his diabetes impacts his work -- if it does -- and if he needs any accommodations.  He’s an excellent self-advocate.  No, I’m not at all worried about him.  I’m just worried about diabetes.  I’m worried about life.  His blood sugars have never been stable at night; it’s a roller coaster of up and down, sometimes frightening me with lows that I haven’t been able to predict.  I’m scared about what might happen when he’s sound asleep. Of course, we’ve created protocols and back up plans.  Doesn’t matter.  Inside, my stomach still flutters.  I anticipate a hospital visit.  And yet, what choice do I have, really?  Have him stay home, with me hovering around him for always and ever?   A bleak view for all of us.

“She probably will fall,” I echo.  I think about the scrape from when she fell last time, the one that she talked about and fret over for several days.  “And, yet, I’m letting you go to music camp.”

He pauses and nods, thoughtful as always, but continues to run holding her bike, folded over on himself like a paperclip.  I can see that this job is not for a overcautious sibling; it will have to go back to dad.  Because parenting requires a kind of controlled release. It is a careful balance between two opposing tensions: to keep them safe and let them go, to release the bike and have the wound care close at hand, to send him to music camp and create the safety plan.  And through it all, my job is to catch my own breath, release the grip of my own anxiety and trust my children to take their next step.