Psychological Support: The Missing Piece in Diabetes Care

Email this to someoneTweet about this on Twitter21Share on Facebook0Share on Google+0Pin on Pinterest0

When I was diagnosed with type 1 diabetes in 1999, I was both overwhelmed with information and desperate to find more information.  It was easy to find depressing facts about the immediate dangers I would face, as well as the future complications I might suffer one day.  When I looked for more, however, something about support or about real people living with type 1, there was nothing more than information about fundraising and camps for kids with diabetes. 

I was in the middle of graduate school at the time of my diagnosis, training to be a psychologist. In the years since, while learning to manage my diabetes, I have furthered my knowledge about how to help others with diabetes make changes and feel better.  I learned quickly that  the psychological aspect of diabetes care is mostly absent in the diabetes field.  Patients had access to information, but they didn’t have support. 

Eventually, I began to counsel people with both type 1 and type 2 diabetes. Using cognitive behavioral therapy, I have tried to help my clients learn how to change the way they think, so that they can change the way they feel and behave. In recent years, by presenting at conferences and meetings, I have been grateful to be able to share ideas with other professionals in the diabetes field about counseling and supporting patients with diabetes. It seems that many nurse educators, dieticians and other health care professionals are interested in integrating the psychological aspect of diabetes care into their practices.    

In October 2012, I had the opportunity to present at the annual Canadian Diabetes Association (CDA) conference.  It was a wonderful chance to meet professionals from all across Canada who focus on diabetes management. I flew across the country from Ottawa to Vancouver to attend (and had my first break from home life since having twins a year and a half ago!).  One of the most rewarding moments of the conference was standing and having a conversation with Chloe Vance and Kerri Sparling, two other presenters “like me.”  Chloe and Kerri are like me because they also live with diabetes and are trying to create new ways of supporting others living with the disease. 

Chloe Vance, founder of the organization Connected in Motion, uses outdoor adventure-based activities as a forum to connect people with diabetes to their peers.  Connected in Motion is a place where type 1’s can be around other type 1’s while being active and adventurous.  This creates friendships that translate into willingness to try new things; whether it be running a race, snowshoeing, or trying an insulin pump, just being around other type 1’s provides motivation and support.  Chloe spoke passionately during her CDA presentation about the way connecting changes the lives of participants, and how it was born from her own need to connect with others with diabetes.  When Chloe looked for it, this type of support was nowhere to be found.  So she made it happen. 

Kerri Sparling from SixUntilMe spoke about pregnancy and diabetes, an alternative to the Steel Magnolias version of events.  Her humor had the crowd in stitches,  but she also touched people with her genuine portrayal of life with diabetes.  I hope she inspired people working with diabetes to consider the Internet as a place patients can access more support and combat their sense of isolation because there is an amazing, supportive online community of people with diabetes.  Many health professionals have never explored it, and blogs like Kerri’s would have made a world of difference to me in the early years adapting to diabetes when I felt so very alone.  I would have gained so much from reading about how other people with diabetes feel when they have a sugar low, or want to get pregnant, or have a stressful doctor’s appointment.  

Like Kerri and Chloe, I am trying to add something to the diabetes field. Psychology is, in my opinion, a missing piece in diabetes care.  Support and counselling are missing in so many cases for management of a disease that greatly depends on healthy behaviors. Balanced thoughts lead to regulated moods, and therefore encourage healthy behaviors. Many people living with diabetes need help balancing their thoughts before they can tackle problematic behavior. After all, when you live with diabetes, you have many opportunities every day to think negative thoughts about yourself. Every time you look at the number on your glucometer, or indulge in a treat, or delay changing that annoying infusion site, you are likely to think negative thoughts about yourself.  You may have access to physicians, nurse educators and dieticians, but these health professionals often lack training in counseling skills.  Many of them still do a great job, but they are trained to inform more than to support, to tell patients what they need to know more than to really spend time listening. 

I tried to use my CDA presentation time at the conference to help educators and other professionals think about how to counsel and support people with diabetes. I always emphasize how listening and empathizing can lead to hope and change. People do not like being told what to do.  They respond better when they are treated as the experts they are, and doctors might not always realize it, but we are all experts when it comes to our own diabetes.  Health care professionals do have their own expertise, but it is not very effective without patients sharing information about their diabetes management.

Sometimes health care professionals ask me how they can give support to people with diabetes.  I tell them  to use a curious, supportive approach.  Ask a lot of questions like:

What has been most difficult since we last met? 

What would you like to work on between now and our next appointment?  

Can you think of changes you have made in the past that helped you manage your diabetes? 

What gets in the way of change? 

Patients need to feel like their health care team is interested.  A patient’s  sense of being cared about by their doctors, nurses and other health care professionals is one of the best motivators for most of the patients I have treated.  People with diabetes can help themselves by bringing more psychology into diabetes care.  You can ask your diabetes team about the support resources available. Ask your nurse educator to set goals with you   If he or she cannot help you, then ask if there is someone else who can.  As people living with diabetes, we need to be our own advocates.  Parents of children with diabetes need to advocate for their children.  Attending to psychological factors is vital to managing the physical demands of such a  demanding disease.

And remember, you can make a difference to yourself and to others.  Kerri has inspired many bloggers to share their own stories, and Chloe now has Connected In Motion ambassadors helping her all across Canada. I am trying to spread the word to health care professionals to try out a new approach with their diabetes patients, one that involves connecting to them as human beings who need support, not just patients who need medication.  It’s Diabetes Awareness Month and I can’t think of a better message to send than: No one is better qualified to change the field of diabetes care than those of us living each day with diabetes.

Michelle SorensenMichelle Sorensen is a member of the Ontario College of Psychologists and has a private practice in Clinical Psychology in Ottawa. Using a cognitive behavioural approach to therapy, Michelle helps patients with a wide range of issues, including anxiety, depression, anger, interpersonal relationships, and health problems. Working with patients with diabetes is an area of particular interest for Michelle. She combines her knowledge about changing thoughts, feelings and behaviours with the understanding that comes from personally living with type 1 diabetes herself for over 13 years to help patients manage their diabetes better.

Email this to someoneTweet about this on Twitter21Share on Facebook0Share on Google+0Pin on Pinterest0

Comments (16)

  1. The internet has changed a lot since 1999.  It has a much wider audience, the technology is better and nearly everyone on it, thanks to blogging, facebook and twitter has an easy to use outlet for what ever they want to talk about.  I started my blog recently to describe my own journey through diabetes and I have found others who do the same.  On twitter I read what other diabetics are doing right now, especially through #DOC and #GBDOC.  And I am also trying to get a diabetes related Q and A site off the ground. I am doing it because I am taking my diabetes seriously right now, and I want to provide my lessons for other people.  It is great that it is so easy to do that and amazing to see I am very far from being the only one.  All this provides a great base for new (and not so new) diabetics to find information and get a grip on handling their disease.  Hopefully reducing many of the psychological issues.

  2. Deborah at

    Iagree with Rob somewhat, but I think many PWDs could use the kind of professional guidance that Michelle is advocating.
    Because so much of good diabetes care requires rethinking & remaking habits and social interactions–often with our nearest and dearest–PWD need more than information. We often need to rethink fundamental issues of identity, family, etc. Alot of people cannot do this on their own.

  3. I was not advocating only using the internet as a source of guidance.  I agree with Deborah that it is important for many diabetics to get intune with their bodies and the way to do that is by forming good mental attitudes.  This is where the counselling and psychology are extremely helpful.  What we have now is a great online community and resource that can back all that work up or provide a better base from which to start

  4. Aimee at

    Michelle, I have a question for you. My daughter was diagnosed T1D last February at the tender age of 3 years old. She just turned 4 last month. She can sometimes be difficult, and I never know if it’s because of her age or her blood sugar (we just started on the pod 10 weeks ago but haven’t gotten to CGM yet – so I can’t know what her BGs are doing at all times). She still has really high BGs (upper 200s, 300s) and really low ones too. Do you have any knowledge you can share about how high and low blood sugars make you feel mentally and emotionally – or how they affect young children? Or could you point me to some research about this? Thanks!

  5. michelle s at

    Thanks Rob and Deborah for your comments!  It seems that different people need different types of support.  I am always trying to advocate that our health care professionals take a look on the patient-driven online community… I agree the support and information there is invaluable.  So many people with diabetes who are referred to me have not explored those resources.  Sometimes they find it too hard to read about other people with diabetes because they believe everyone else is handling their diabetes better.  So we need to increase support and provide different options.  I love the Connected in Motion model of just doing fun stuff with other Type 1’s too. 

  6. michelle s at

    Hi Aimee.  I am sorry to hear about your daughter’s diagnosis.  As a mom and a diabetic i am guessing that when she is difficult, both her age and her diabetes are factors!  I have a daughter the same age, and she can be challenging without those highs and lows to worry about. 

    One of the things to think about is how you can advocate for her with friends, family and especially at school to educate people about the way diabetes affects emotions, so that when she is struggling she is shown compassion and not punished.  An excellent parenting book that could help you with coping at home is “Connected Parenting” by Jennifer Kolari.  It ties in to what i said about health professionals needing to listen more than instruct and advise…. us parents need to do that with our kids too.  I’m sure you are doing a great job but definitely acknowledge the impact of blood sugars on emotions, as well as the overall strain of managing diabetes.

  7. Thank you, Michelle, for working so hard to energize an area we desperately need!

  8. Michelle,

    I was so happy to come across your post!  I work with clients living with a range of medical issues, and one consistent factor in serious and chronic illness is the need for good emotional support.  Thanks for stating this need so well.
    Warmly,
    Ann Becker-Schutte

  9. Aimee at

    Thanks Michelle, our daughter was challenging even before the “terrible twos” and diabetes. My husband and I struggle with discipline and I feel like we are “ruining” her for life with the way we react to her and deal with her! I have always thought it is US who need to change, though, and not her. This book focuses on empathy, which we both desperately need to do, especially in light of the T1D. I cannot imagine what she must feel like when she is high or low, and she is too young to recognize it or verbalize her feelings. Thank you so much for the book recommendation, I am buying it today!

  10. Onoosh at

    Michelle! You make me wish I were Canadian! :-)

    You certainly summed up the psychological challenges of diabetes–I’m a “LADA,” a.k.a. “1.5” diabetic, living through my first diagnosed year, and was beginning to wonder if I was mental, as well. The mood swings, negative thoughts and doubts (plus a certain tendency toward perfectionism) have plagued me increasingly as I walk the path only other diabetics “get.”

    What are your recommendations  for someone like me, who needs a  knowledgeable  support group beyond my very helpful medical team, especially with the emotional side of the disease? 

  11. Michelle – I wish I could find a way to contact you directly, but I’m quickly reading this while nursing my newborn. (Congrats on your twins, by the way!) I’m a therapist in the states (Chicago) and I’m in the midst of diagnosis (3 pregnancies with gestational diabetes that seems to be sticking around postpartum) and I’m also in private practice here. I would love the chance to connect more personally and talk about ways to potentially collaborate to address the deficits in the diabetes world about the psychological aspects. It’s disheartening to know that depression and diabetes often go hand-in-hand, but as someone who has been diet-controlling for 2 years now, I can see why! Would love to hear from you!
    Amy

  12. Michelle at

    Onoosh, that first year is really rough.  I understand that drive towards perfectionism and I know in my early years I did not slow down enough to grieve the diagnosis and changes in my life.  I wrote about how that impacted my health in an article three years ago: http://kriscarr.com/blog/diabetes-meet-my-green-juice/

    I recommend that you ask your medical team about therapists or other sources of support, and I also think that some people find good support in the online diabetes forums like TuDiabetes.  You are welcome to email me for more thoughts/ ideas. I hope you can find ways to process all this emotion.  my email is sorensenCBT@gmail.com

    Amy Lynn, I would love to touch base too!  please use my email above and we can chat.  So sorry to hear the diabetes is sticking around.         

  13. Amy Habinski at

    Any chance there’s video of your presentation?

  14. michelle s at

    hi Amy.  neither of the talks I did at CDA are on video. Sorry!
     

  15. You’re doing such rewarding work Michelle!

  16. Sarah at

    Such a great post, and I resonate strongly with it. I love how you articulate so clearly why counselling approaches, and helping manage people’s thoughts, is an essential (and missing) component of diabetes care. For me, as a creative arts therapist, I see how improving quality of life through self-expression and creative collaboration with others can help PWDs make sense of their diabetes, and understand whatever obstacles they may be facing in improving management and burnout prevention. Living healthfully with this disease requires so many “soft skills” that most endo clinics are not equipped with. The trend is in the right direction though! 

Add a comment

Your email address will not be published. Required fields are marked *


*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>