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.  

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.