Nov 13, 2010

Growing Up Sick

A teacher asks Doctor D about a diabetic teenager in his class:

“His sugar readings are often over 400. His mom says this is normal. Can this be normal?”
Before we start Doctor D has to throw out his usual disclaimer: No medical treatment advice shall ever rear it ugly head in this post! Okay, I feel so much better! Now on to normalcy:

What is NORMAL?
a) A state of harmony within the body and mind that leads to health and well-being.

b) The typical or status quo for a person; the way things usually are. [eg: “Doctor D’s weekly posts are normally late.”]

c) WTF? There is no such thing as "normal" for a teenager in the clutches of puberty.
I’m guessing that mom meant something between B and C.

The Trials and Tribulations of Puberty:

The teen years are some of the toughest in a life. You suddenly realize that you are no longer a child and find yourself drowning in a sea of raging hormones. You don't want to hear your parents advice or follow their rules, you are desperate to fit in with your peers, you feel invincible, and you can’t wait to take risks (especially the ones adults tell you not to). The only people more stressed than teenagers are their parents.

Now add to a chronic illness to all the “normal” teen drama and you have a really volatile mix! If having a chronic illness and being dependent on doctors, tests, and treatments can push even a stable, well-adjusted adult to the limit, just think of the havoc it can wreck when you are 13!

Type I Diabetes is a perfect example of this:
Patients are often diagnosed as small children. They often don’t remember a time they weren’t constantly counting carbs and taking insulin under their parents direction. Doctor D has seen it again and again: a diabetic kid does fine until about 13 when they suddenly decide they have to live a “normal” life. The teen acts as if there is no illness and begins ignoring all the rules that keep them alive. In my experience chronically ill teens have difficult identity issues and can be in dangerous denial about the seriousness of their illness.

Parent during these times get frustrated and burnt out. The harder they try to manage their teen's illness the more the child resists.

"I SAID take your insulin!!!!"

These power struggles between parents and teens happen in most homes, but when the teen has a serious chronic illness the tension can rise astronomically!

So why did mom say everything’s okay?

Parents of chronically ill teens often feel helpless and very guilty that they cannot protect their kid's health the way they used too.

A teacher asking about his illness could be a very sensitive issue for the the teen and the parent. I can understand the mother just answering "oh that's normal for him" to avoid discussing the extreme stress and difficulty of the situation.

Sometimes when everything’s going to hell in a handbasket it’s easier just to pretend we’re all fine.

So you really want to help?

But if you know things really aren’t fine, and you’re someone like a relative, teacher, doctor, counselor, friend, etc. you really should try to help the frustrated family.

Here’s how you offer assistance without making things worse:
1) You must be sensitive to what the teen and the parents are going through. If you act like you are just going to ride in on your white horse and save everybody you will get shut out by the parents and teen pretty quick. (Doctor D has learned that one the hard way!) Start by acknowledging how difficult the situation is to both the teen and the parent.

2) Make it clear that you will protect their privacy. The teen should know you won’t embarrass them in front of their peer by exposing their illness against their will. The parents should know you won’t shame them as bad parents because their teen’s care isn’t working.

"Embarrassed? Us? No way! We're like the the smoothest guys we know. ...did we seem embarrassed? Because we totally aren't."
3) Talk to them like they are normal. (Normal definition A) Even sympathy can be irritating and isolating for a family dealing with chronic disease. Talk to the teen and the parents like you are talking to normal people dealing with normal problems.

4) Use your strategic position. Parents and teens often struggle to a stalemate. Being neither the parent nor the teen offers you a huge tactical advantage for breaking the deadlock. Let’s say you’re an adult such as a teacher or doctor. Sure you’re authority figure, but you aren’t the parent therefore the teen is much more likely to listen to your advice about sticking with treatment. So many of the stresses in a teen’s life are social so if you are in or around the social environment you may be in a unique position to explain the stresses the kid is going through to the parents. If you are a peer then you can help the teen "normalize" their chronic illness and see that it’s not something to be ashamed of.

Being a semi-independent semi-adult is a weird state that strains the therapeutic partnership with the parents that previously worked so well for the chronically ill child. As an outsider you can help both parties create the new strategy that will help the young person manage their disease for years to come.

5) Be patient. Unhealthy patterns usually don’t straighten out overnight. Nor do strained relationships between chronically ill teens and their caregivers. Often breakthroughs are followed with setbacks. Take the long view and remember the tumultuous teen years don’t last forever.
Thanks to this awesome reader for caring about his chronically ill student!

Doctor D always enjoys hearing your thoughts in the comments.

Have any of you worked with chronically ill teens or their families?

I know some readers have had chronic illnesses since childhood. How did you successfully navigate your teen years?


C said...

I volunteered to help run a support group for teens with type 1 diabetes in our community- I think for many of them, it was helpful to meet other kids with the same illness as them- they weren't different in this context.
One of the things i'm considering is adolescent medicine- I think that teens are a really interesting age group with unique needs, especially in the medical field.
When I was little my asthma was way more severe than it is now, and a lot of the time I'd have to go to the nurse to use my inhaler or nebulizer- it SUCKED being differentiated from my peers.
great post!

type1medic said...

I have had type 1 since I was 12 and so has my twin sis and while I kept mine in check as good as I could have with all the hormones raging and what not my sister just let it go. In fact she wanted to lose weight to fit into her prom dress and decided to stop taking her insulin to do it. this ended up with her in DKA and she didn't get to go to the prom. I was more or less scared crapless about what could happen if I didn't take care of my diabetes so I tested at least 8 times a day and was very good at counting carbs and also bolusing with my pump. now my sister regrets her actions as a teen she has only one complication so far from it all and I am still doing well besides hypo unawareness but my CGM helps with that. I think it comes down to the child I mean our parents involved us in all of our care from the get go. we were never told we could not have something but instead just ate everything in moderation. We were always told we could do anything and I went one direction with my care and she went the other resulting in my parents taking over her care till she was ready to fully handle the diabetes care.

Katie said...

My blog-friend Jamee shares her insight on the idea of "normal" in the midsts of chronic illnesses at Reading her insights have helped me try to figure out how to interact with peers who have chronic illnesses.

<>< Katie

Doctor D said...

I once knew a diabetic teen who actually used DKA as a weight loss strategy. She would admit to me that she looked forward to going to the ICU because "pounds come off there."

That makes about as much sense as cutting of your foot to fit your shoes, but in the mind of a self-conscious teenage girl DKA weight loss was the best thing about having Diabetes.

Doctor D pulled out his hair over that one!

Pissed Off Patient said...

I totally agree with your post but I had a very different experience.

My parents could have cared less, they are not medically oriented in any way and in the late 80s there was still a very strong perception that asthma could be solely psychiatric. In fact my father once asked my ped if I needed to see a psychiatrist and there were kind of shocked at the question.

I was on my own. The second I had a license to drive, I handled all my appointments, driving 30 miles to the doc (rural area) in the midst of acute attacks.

I was always very motivated to take care of myself because I really wanted to breathe. I was contacting the ALA and National Jewish at the age of 16 asking for help. I don't know if diabetes is a slower slide down to the bottom, but with asthma, if you can't breathe, you can't breathe and you tend to get rather desperate to do something about it.

So perhaps the character and nature of the illness also shapes the behavior.


Anonymous said...

As a teen, I handled one of my body's "tricks" by passing out in unlikely and interesting places, i.e. I didn't handle it well. It might have helped to know what I was handling. Too bad no one thought to check my blood sugar. So I learned some lessons the hard way about how, when, and what to eat. Not grape HiC and a brownie for lunch. Not after not eating all day. And also, incidentally, I learned not to have a lot of faith in medical providers who didn't listen to my history. That was unfortunate - it's gotten in the way as an adult.

tracy said...

Our son has Asperger's and it has been, to put it lightly, a pretty bumpy road up to this point. He is 19 now and about to start college classes. Even though he attended a small private school (ka-ching), he was still very socially akward and had major school anxiety. It was and still is heartbreaking, although he seems to be doing better in social encounters. He says he is looking forward to college and i am hoping it will go well for him.

tracy said...

Dr. D,
i can understand the diabetic teen and her weight loss stradegy. It is sad, but understandable.

Anonymous said...

I worked as a social worker with teens with perinatally aquired HIV (they were born with it). A lot of them would play around with their meds, and it was heartbreaking, because the virus actually adapts if you miss as little as two doses a week, and then they can't use that class of drugs anymore. So despite all the medical technology more were starting to die. I really loved it though. They were great kids in a bad situation...I mean it's hard thinking your invincible and dealing with death at the same time. Or developmentally almost impossible?

As an adult with chronic health conditions I like your post about, and what is normal?


Anonymous said...

It so refreshing to see a doctor think about how chronic illness affects a family.

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