The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.
The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic about the webinar and particularly the importance of ending the stigma around mental health. Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too. The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about
It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes.
Prior to diagnosis very few people know anything about type 1 diabetes and therefore, the way they view their condition is very much mediated through the eyes of the professionals who educate them (whether purposefully or through indirect messages communicated via language, attitude and actions etc). So I lay some of the blame for mental health issues with the diabetes system.
Here are some suggestions (there must be lots of others, please share yours in the comments) for prevention of mental health problems that should, in my not so humble opinion be included in diabetes care;
Don’t Treat the Hba1c as the be all and end all pass/fail mark.
Do educate people about what the a1c means and what we know about the link between the a1c and complications. As well as this, people should know how many type 1s actually achieve an a1c less than 7% in real life (most studies of this come up with fewer than 20%). Feeling like a failure appointment after appointment and/or living to achieve a particular level of glycated red blood cells is bound to get you down after a while. Cue depression.
Don’t Set People Up for Failure Later
There is zero evidence that “good control” prevents complications. Sure it definitely does reduce your risk, it delays them and quite likely it minimises the severity BUT if we are constantly told, as we are, control prevents complications, then what happens if we get a diagnosis of background retinopathy (as about 80% of type 1 diabetics do after 20 years of diabetes)? I’ll tell you what happens, people panic and see it as the beginning of the end. I’ve heard this phrase so many times from D veterans who are diagnosed with a complication. The prevention message is helpful and hopeful but it creates a big black pit of depression and despair when, as most do, people encounter a complication. Catastrophising is another issue, to hear some ‘experts’ talk you’d think that once somebody has a couple of dodgy blood vessels in the back of their eye, then they’re set for every other complication as well. This is untrue, for most people who’ve had type 1 for more than 30 years they’ve had some kind of complication encounter, very, very few of these people find it has a major impact on their life.
What’s With the Weight Obsession?
Anyone would think they were trying to give you an eating disorder or weight obsession at diabetes appointments. Given the stats that indicate t1 diabetics have an increased risk of eating disorders, (actually diabetes IS an eating disorder, to be a “good” diabetic requires an unhealthy level of focus on food IMO) surely the weight thing needs to be handled sensitively, particularly amongst adolescent girls. A paediatric endo said she had had 2 girls in the last couple of months tell her they’d sooner be blind than fat. This represents a tragically sad collision of diabetes and adolescence, but how awful that that’s something young girls are seeing as their ‘choice’.
There’s Nothing Wrong with Instant Gratification… Sometimes.
I believe many of us, particularly adolescents would be more encouraged to manage our diabetes if it was “sold” as a means of feeling better now and of maximising lifestyle now rather than an insurance policy for 20 years time. Similarly if we were encouraged to engage in physical activity for fun and mood enhancement now, rather than to be fit and prevent a heart attack in the future, then perhaps we’d see it as a benefit and not something difficult that isn’t worth the pain of hypos and hypers to undertake.
Diabetes isn’t Normal
Let’s acknowledge that there’s nothing normal about the medicalisation of your life that happens when you have diabetes. It sux. We shouldn’t be made to feel bad because we’re not jumping about going “oh I’m so glad to have diabetes” or “I can do anything”.
With “prevention” being the buzz word of the last couple of decades in diabetes, what are your recommendations for preventing diabetes healthcare from giving you a mental health problem?
Being with my type 1 tribe is good for my mental health! Me at Fed Square, DX2Melbourne. Give the D community a try for preventing diabetes distress/mental health complications.
Special thanks to Alana Hearne of enlighteneddiabetic.wordpress.com for this pic of me, taken at Dx2
Abbott Diabetes Care covered my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if required, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott .Tweet