A couple of blog posts were brought to my attention yesterday that got me thinking. Really thinking.
George thought I might be interested in a post on the blog, Wife of a Diabetic, and indeed, I was. As always, I encourage you to head over and read for yourself, but the title of the blog is pretty self-descriptive. From the sub-heading: My DH went from pills to insulin shots in March 2006 and he does not deal with it at all… And I need an outlet for my feelings and my thoughts…
I read this blog for a short while not long after I started blogging. Eventually, I stopped reading because I found her viewpoints toxic, and I thought Wife and her husband needed family therapy. Reading it started to feel voyeuristic, and even more unsettling to me, I had the skeevy sense that I was somehow complicit in their obvious dysfunction even though I know their issues will continue whether or not I read.
The post that George thought I should read was not specifically about Wife though. It was an email that Wife received from a reader, a man in his early 30’s, Gregory, whose wife has diabulimia, and who expressed how grateful he was to have found the spouse of another diabetic who doesn’t follow their regimen. What Gregory didn’t seem to realize was how Wife of a Diabetic is a sinkhole of negativity just waiting to suck in other spouses feeling lost and alone. I could feel the heaviness of my heart as I read Gregory’s email, recognizing the irrational priorities his wife has adopted in pursuit of thinness, knowing that as serious as her mental illness is, there’s treatment, and knowing there was no way to reach out to a man with nothing more than a first name.
For Gregory, the spouse in need of support and resources, of which admittedly there are not a lot, but they do exist, Wife was there to make a bad situation worse. “I think it’s a side affect [sic] of the drugs. Or a side affect [sic] of highs and lows…Don’t expect her to keep a promise. I don’t think it’s possible. Don’t expect her to be honest with you. Don’t expect her to take her meds.” Her advice was to either stay and put up with it, or leave. End of story. This woman with her own train wreck of a marriage was essentially telling him to sit on the train tracks and wait so he too could have his very own mangled mass of train wreckage.
I considered leaving a comment. I wanted to tell her she was wrong, but mostly I wanted to tell Gregory that he doesn’t have to park himself on the train tracks with Wife. A little bird told me that Wife reportedly doesn’t like to publish comments that don’t feed her martyrdom though. George told me he posted a comment suggesting that Gregory visit my blog, but more than 24 hours after the fact and as of this posting, his comment has yet to pixelate, proving the little bird correct. The irony that she has a blog to complain about a husband who refuses to engage in his diabetes care, yet she refuses to accept help from others or be constructively proactive was so obvious it hurt.
As I was digesting this, Kerri tweeted a link to Carey Potash’s post on Dlife’s Blogabetes about the death of Casey Johnson. You might be like me, asking, who the heck is Casey Johnson? Apparently, Casey Johnson is the daughter of New York Jets owner, Woody Johnson. If you aren’t a Jets fan, which is likely the case, you might be more familiar with the Johnson family from their endeavors in health and beauty products since this is the Johnson family of Johnson & Johnson, makers of such products as baby powder, Q-Tips, and One Touch test strips.
Ms. Johnson was only 30 years old, but she lived life on the edge, to put it nicely. Drugs, booze (there’s a theme going this week, eh?), and a nagging case of T1 diabetes dating back 12 years or so into which she reportedly never put a lot of effort. As Carey suggests, the irony is that Ms. Johnson’s dad is chairman of JDRF, and her name is plastered on widely-used diabetes management products. Not to mention that she was a gabazillionaire, and as we know, the richer you are, the better your health care services are – assuming you seek out those services, that is.
I contemplated these young women, Ms. Johnson who’s dead, and Gregory’s wife, barreling towards death at a pretty good clip. Two women with type 1, neither taking very good care of herself, one with what appears to be an eating disorder, and per Gregory’s account, has been diagnosed as such, and another with substance abuse problems, which much like an eating disorder, tend to be symptoms of other unresolved psychosocial problems. The bitter tone of Wife’s response to Gregory’s email, asserting his wife would never change, once a liar, always a liar, and he would just need to accept it or leave. The reports that Ms. Johnson essentially killed herself by not managing her diabetes.
I could almost hear the accusations that they did it to themselves. But did they? I’ve been down that road, so perhaps I’m biased, but I like to think I also have a shred of insight into how and why a diabetic travels that road at all. I think it’s shortsighted to lay the blame solely at the feet of anyone who’s lost their way with diabetes management. As a former non-compliant diabetic, I don’t mean to suggest that I didn’t have a hand in the self-destruction. It’s called self-destruction for a reason after all. However, it’s important to remember that diabetes mismanagement doesn’t happen in a vacuum. There are outside forces that can and do have an effect on disease outcome. Maybe the responsibility needs to be shared.
Yesterday, wondering what other diabetics thought, I posed the question on Facebook, asking anyone who might want to offer an opinion, who was responsible when a diabetic doesn’t do as they’re told. Scott Strumello, shared his insight:
There is no such thing as a “good” or “bad” diabetic — just as we all know the idea of glycemic control (implying that the patient has control over every situation) is also a lofty theory that too often fails in clinical practice. If anyTHING is to blame, it is not the diabetes, but the overly complex treatment protocol. To succeed with intensive therapy, a patient with type 1 diabetes must take 3+ daily injections of insulin (or pump therapy), 4+ daily blood glucose tests, and follow dietary and activity instructions, all of which is subject to change without notice and without warning at any point in time. The principle underlying intensive insulin therapy is grounded in the assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life — therefore, it is the treatment protocol, not the patient nor the disease that is to blame!
I agree that the treatment protocol is ridiculous and labor-intensive. Pretending to be a pancreas day in and day out isn’t as fun as it sounds. If doing this crap every day until I die isn’t a complete time/energy/emotion succubus, I don’t know what is. People without diabetes only have the hardship of imagining living like this for a few seconds before they have the luxury of conveniently dismissing it as not as bad as we say it is without ever really having to do it.
We all know the rest of the world doesn’t “get” what it’s like to live with diabetes. Many think it’s the disease of fat people who eat too many donuts, and we just need to get off our collective asses and go for a walk, so we’ll all be cured. Forward your thank you notes to just about any mass media outlet for that prevalent misconception. If people are paying attention, they might notice the pump tubing and realize it isn’t a phone, or worse, a beeper, the surreptitious fingersticks, the dazed expression of a low BG. They aren’t privy to the perpetual mental purgatory where you are forever destined to obsess about how much insulin you took, how much you should take, what you should or shouldn’t eat and how many carbs might be hiding in it, and how this, that or the other thing is going to affect your blood sugar. All the bleeping time. Arguing. Cooking. Conversing. Dancing. Decorating the Christmas tree. Doing laundry. Driving. Funerals. Gardening. Graduations. Grocery shopping. House hunting. Job interviews. Masturbation. Meetings at work. Mini-golf. Movies. Participating in sports. Parties. Playing games. Reading. Sex. Shoveling snow. Showering. Signing up for a checking account. Sleeping. Standing in line at airport security. Taking exams. Trying on clothes at the mall. Vacationing. Walking the dog. Watching TV. Weddings. It interrupts everything.
And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?
Since this is the treatment protocol with which we’re stuck though, how about a little more support from those people who call themselves our diabetes care teams? To a large extent, the label is a misnomer since we’re the ones burdened with all the work, but that shouldn’t absolve them of their responsibility to better support us. Where is the general consensus by the medical community that they’re screwing up by not providing the resources we need to properly manage this time, labor and emotion-intensive disease? Could there possibly be any correlation between their lack of ownership for the countless diabetics out there who have just given up the fight, and the emails I get almost weekly from people who want mental health help, but don’t know how or where to find it because it probably doesn’t exist in their community? The medical community just wipes their hands, pretending they’ve given us what we need, but I see marginal evidence that they even understand what we need since there aren’t adequate mental health services for most of us. Then they say we’re the ones who need to shape up or ship out if we can’t get with their program?
I can’t say whether or not something could have been different for Ms. Johnson. For all I know, people did try to help her. I’m pretty confident she probably didn’t get the post-diagnosis psychoeducation every last one of us should be getting about the behavioral health aspects of diabetes because I don’t think that sort of preventive protocol exists. The very notion that diabetics and their families be taught about the risks of depression, anxiety, food and body issues, substance abuse, family conflict and burnout before they happen is absurd, right? I guess it takes a girl with a psychiatric rap sheet that drags the floor to think up such ridiculous concepts.
As for Gregory’s wife, her symptoms sound pretty severe in that she doesn’t seem to have a lot of insight into the nature of her problem, at least based on Gregory’s description, but that’s a common feature in patients with eating disorders before they engage in treatment. It takes time and a good treatment team of both eating disorder and diabetes care professionals, but there’s nothing to indicate she is beyond recovery. Contrary to Wife of a Diabetic’s assertions that Gregory should just accept his wife’s mental illness, there is hope. I ask that you send a prayer, positive energy, or hopeful wish that he finds his way out from under the shadow of doom cast by Wife, and into the light of the rest of the DOC who will gladly welcome him and assist him in finding the resources he and his wife need so she can experience the joys of recovery that I’ve found. The Blame Game seems to be a fixture in life with diabetes, but if anyone is pointing fingers at me, I can only hope it’s because they recognize that I’m trying to change the rules of the game so people with diabetes end up winning.