Mental Health and Diabetes

As Mental Health Month comes to a close I wanted to share my thoughts on what mental health has to do with diabetes management.

In short: everything.

I believe it’s fair to say that the treatment of diabetes lends itself to behaviors that mimic or lead to the development of actual mental health disorders: eating disorders, anxiety, depression, you name it.  The personal responsibility for day-to-day management combined with the often-aired doom-and-gloom warnings of dire complications, significant cost of medications and supplies, lack of social understanding, and isolation is difficult to process into positivity.  Having diabetes can feel like walking an endless road full of deadly perils alone while armed only with a map written in Sanskrit.

The irony is that if you let all those things get to you, everything gets worse.  Ignoring the disease to save your sanity can be disastrous.  That’s why we need support to keep going. 

Maybe that comes from the online diabetes community, where we can be inspired by the encouraging voices and ambitious people living with diabetes.  Maybe it’s the annual conferences and workshops on diabetes that, among other benefits, showcase just a sampling of the sheer number of people involved with diabetes in some capacity.  Maybe it comes from friends or family members who listen when we vent on a bad day, gently ask us how it’s going when we’re quiet, and laugh, eat, and spend time with us with acceptance of who we are and whatever health conditions are a part of us.  Maybe it comes from local support groups that introduce us to other people with diabetes and their stories, where we can talk about our current challenges or topics not related to diabetes at all.

Finally, we can find that support from mental health professionals, because the truth is that the totality of the above options are sometimes not enough without the foresight to sort through and connect them.  It’s like a scatter plot graph of support—you get opinions and facts here and there, but it’s more helpful to understand the trends by drawing a line. People trained in mental health can help you sort through the mess of conflicting ideas, see the bigger picture, and find the back door to circular logic.  Those thoughts that accumulate in our heads like extra glucose in our veins—you’re not doing enough, you need to try harder, you're failing.  We’re in the trenches of diabetes management every hour of every day, and it’s eye-opening to get an outside view.

But even in the 21st century the relationship between mental and physical health still struggles for validation.  Research seems to recognize it more and more, but the stigma is still prevalent.  Perhaps a holistic approach to diabetes would mean people get the care they need to achieve better outcomes, saving health care money in the long run.

I wish that when people are diagnosed with diabetes they would be referred to a therapist as well as an endocrinologist.   I wish counseling was offered as readily as visits with nutritionists and diabetes educators when numbers aren’t where they should be.

The Healthcare Experience: A Clash of Experts

Throughout my time with diabetes visits to the doctor have undeniably improved.  As a teen I used to cry and scream in the car at my mother after every consult (God bless all the parents of diabetics).  I committed all the biggest sins: made up my numbers, told any lie to appease my doctor, and pretended to commit to new plans without the slightest consideration. 

I feel like I’m in a good place now: I like my doctor, feel like I can be honest with him, and sometimes actually don’t want to wait for three months until the next visit.  Crazy, I know.  After 15 years I finally established a doctor/patient relationship that worked like it was supposed to: as a team.  The post-doc dirty martini tradition I started a couple years ago is a reward, sometimes a celebration, and rarely a somber distraction.

But there are still troubling issues I can’t figure out.

The last doctor visit was one of the best I’ve ever had.  He used words like “tight control” and said my A1C didn’t need to be lower—probably the closest I’ve ever come to a compliment from a doc.

More prevalent though were words like “safety.”    The theme of this visit seemed to be lows even though they were far outnumbered by highs, and I hadn’t had more than a few or any severe ones.  My A1C had been steady for a year, and the last result had actually gone up a smidge.  But the conversation and according medication adjustments hinged on safety and lows, in my belief, because the student/resident doctor’s “focus du jour” was on lows. (She had asked me with incredulity during our one-on-one consult if I drove.  I was, and still am, irked by that question.  Does diabetes mean you’re supposed to be relegated to taking public transit and cabs?)

The most lasting effect of this visit was an increased paranoia of going low, “cheating” more, and higher BS.

In conjunction with the talk about lows I was also gently pushed to consider a pump and/or CGM and set up a meeting with a diabetes educator to learn more about the products available, which I balked at but pretended to consider in the future, kicking the can down the road.  I am profoundly averse to change; I refuse to use the bank drive thru, still use a typewriter on occasion, and was a late adopter of smartphones. 

Both of these recommendations—the medication adjustment to err on the side of highs instead of lows, and the consideration of switching from MDI/insulin pens to a pump—are absolutely legitimate.  One hundred percent.  I just didn’t know if they were right for me.  I kept asking myself: if things are going good, why do we have to change anything?  I didn't have a problem with using pens or having the occasional low because I over-corrected from a high; why did they?

On the other hand, what if I was just being stubborn?  I challenged my reluctance to embrace what I knew could be a very positive change.  I likened the switch from multiple daily injections to a pump as the same hesitation I felt when going from pills to insulin—a change I wished I’d made sooner.  I have an inkling I’ll feel the same about a pump when I try it.  I’m trying to figure out what’s right for me and if it’s personal preference or fear that holds me back from switching.

That’s the hard place I can’t seem to escape in the doctor/patient relationship: there are two experts in the room with often differing views on the best course of treatment.  The doctor has formal education and vast knowledge on the disease, and you have an intimate understanding of your body and its day-to-day management.  It’s good for one to challenge the other with ideas, but hopefully the ending place is not so far apart.  

In the end, patients should leave with plans that are actionable and leave them empowered.  We should feel we have the agency to chew, and not just swallow, our doctor’s orders.

The Other Half of Diabetes: You Know, the Mental One

It’s not possible to measure the effect diabetes has had on me emotionally.

There’s the endless tasks of a day-to-day routine.  There’s the guilt over highs, panic over lows, and frustration over the numbers that don’t make any sense.  There’s the worrying about how much my loved ones worry about me (meta-worrying? J).  There’s the bad days where everything seems hopeless.

Mental health doesn’t get enough attention in diabetes management.  They loudly broadcast the possible side effects on your kidneys, eyes, heart—everything but your brain.  Nobody in the doctor’s office (or elsewhere) encourages you to pay the same attention to your mental health as they do your numbers.

But treating the emotional/psychological side of living with a chronic disease is just as important as keeping the numbers under control.  People with diabetes can have all the information and resources available to them, but it won’t help unless they’re willing to use them.  A doctor can prescribe medications all day, but they won’t do anything if the patient doesn’t take them, and the patient won’t take them unless they believe it matters. 

When I my A1Cs used to be in the 10s, 11s, 12s, my doctor used to always conclude that I needed to visit the diabetes educator again, as if education and not attitude was the problem.  As if I needed to see the plastic pork chop again to understand the proportion size for meat.  I knew; I just didn’t care.

Attitude is everything.  So is hope.

As a wise blogger wrote today for #DBlogWeek (I’m sorry I can’t remember who it was, I read more than a few today J), it could be worse.  It’s true.  We’re alive today, and our blessings only increase from there.

I recently started a new mental exercise, fill in the blanks style: 

_______ today as if _______ was a gift

Because it is. 

Message Monday: What I’m doing here

I’m stoked to take part in Diabetes Blog Week for the first time this year!  Thank you Karen (@KarenBittrSweet) of the Bitter Sweet Diabetes blog for doing all the work to make this a wonderful week to learn from each other and discover new D voices!  Read them here.

I set up this blog in 2014 because I had known for a long time that going it alone wasn’t working anymore.  I’ve lived with diabetes for 16 years—most of them poorly controlled, the last few well managed, and all of them alone.  I could count the people who knew about my diabetes with two hands and the people I’d personally told on one.

When I emerged from my “dark ages” of diabetes and got back on track I realized my numbers were fine, but mentally the disease was still wreaking havoc.  My A1Cs were the best they’d ever been, but I still couldn’t talk about it.  I had neglected a key part of diabetes management: the psychological need for support.

So I went where the experts, my diabetes peers, were: online. 

Finding the online community was invaluable.  I found people I immensely respected who were following their dreams, having families, and advocating to make things better for people with diabetes.  

Why online?  For one, you get to connect with, learn from, laugh and cry with people.  Two, you don’t have to wear pants or makeup while doing it. 

When I moved to a smaller town from the metro area I sadly had to say goodbye to my local diabetes support group and hadn’t been able (read: hadn’t tried) to round up people to start a group in my new area, so I went online.  Like in the support group I sat back, listened to some stories, and slowly joined in, ever appreciating the courage and resiliency of the people who made me proud instead of ashamed what made us different.

I also hoped to add my voice, because so many times while reading a book or a blog by an author with diabetes I got that feeling that screamed, “ME TOO!”  I wanted to share the hard-won lessons I’d learned from my mistakes, the facts that changed everything I felt about diabetes and still rely on daily, in hopes they are of any use to others. They are:

• You Can Do It

People living with diabetes are incredibly strong.  We practice many skills throughout the day: constant math for carb calculations and insulin doses, medical equipment troubleshooting, coping skills to deal with constant strain and unpredictability, and on and on.  We’re awesome, and we need to acknowledge that.

We’re often reminded by well-intended people, organizations, and media that dangers and dire side effects are possible with diabetes, but only in the diabetes community is it made clear that your life is more full of possibilities than it is of limitations.  When I diagnosed I thought I had to give up my dreams for the future.  Now I realize that that misconception, not diabetes, was what stood in my way.

You can do it!

• It’s Easier with Gratitude

Everyone with diabetes knows it’s no cake walk.  While the numbers go up and down they sometimes take your moods with them, and either one can go off the rails without provocation.  Diabetes is a party that never ends, even when you get tired. 

It’s expensive too.  I’ve left the pharmacy a number of times with tears in my eyes.  After indulging in self-pity for a while I try to remember that I’m incredibly blessed to have access to life-saving medicine, even if it costs me dearly. 

On days when I’m mentally stuck in muck, when I’m ready I remind myself I’m lucky to have made it this far and to have today.  I’ve found blessings are way more fun to count than carbs.

• ...And People

It’s also easier with people in your lives who support and accept you.  I used to fervently defend the belief that you could do it by yourself and didn’t need anyone to be successful at diabetes management.  I suppose in some ways that’s true, but it’s lonely, and for me at least, emotionally damaging.  I still love me some independence, but engaging with people about diabetes is empowering, educational, and inspiring.  I’m encouraged to challenge myself and do better.  It’s gotten easier to talk about it with other people in my life and support those I know who live with diabetes, which is a wonderful feeling.

Thank you for that.