Why You Should Listen to that Diabetes Amputation Story
The stigma within the stigma. One would think that having diabetes is stigma enough; the perception of not having taken care of ourselves, of being overweight and lazy. It tends to invite everyone, from family to casual acquaintances, to strangers, to give us their unsolicited opinions as to what we should do in order to turn the tides of diabetes around. It really is quite uncomfortable to have someone in our faces trying to pry such precious information from us. People really seem to lose their ‘social filter’ when it comes to diabetes.
So it makes sense that we would seek out comfort within the ranks of other people with diabetes; people who have shared our path, or who are at least, familiar with it. But this support does not always materialize. In fact, there’s something that we are not quite allowed to discuss openly with other people with diabetes. (At least, not without some pushback.) And that is the referencing of major diabetic complications such as kidney failure, amputation, blindness, or death, etc.
One may see this readily in diabetes forums or online-groups or communities. If someone shares they have had a complication, or even shares a picture, they might be chastised by others who ‘don’t want to hear,’ or ‘see’ their complication. They see it as gross, in poor manners, frightening, or rude. And if this were to be information shared by someone unrelated – from a third cousin, twice removed, and not their own story – I might agree. But more often than not, I have to remind folks that support and awareness do NOT stop when we undergo major complications. In fact, this is when we need it most.
You see, even though I have only had diabetes for 6 years… I consider myself as having had diabetes for decades and decades. My father had diabetes for 20 years; his father had diabetes; all my uncles have had diabetes. And now my mother and brother do as well. I have never not been under the cloud of diabetes. Under its threat and regime.
We often forget that diabetes is not just a physical condition – it is also a psycho-social condition which affects the dynamics of an entire family, and which requires social support. 20 years of having worried about my father’s food intake, medications, testing supplies, low blood glucose episodes, neuropathy, potential injuries, wound healing, eyesight health, kidney health, etc. have taken a toll on me and my entire family. In the last two years of my father’s life, we were his most direct caregivers: we fed him, clothed him, gave him restroom breaks, diaper changes, showers, at-home dialysis treatments, physical therapy, etc. My father passed away in 2003, while awaiting surgery for amputation… But his diabetes and consequent death are still wrecking havoc on our family dynamics. Our family is destroyed.
This is very traumatic. There are a lot of feelings and scarring around these events. I should be able to openly discuss these things, and how RAW and angry they have left me. So should my family. But generally, we are not allowed to speak about any of these things. NO ONE wants to hear about the REALLY negative aspects of diabetes. The real demon lurking behind the curtains.
If we were discussing breast cancer awareness, it would be different. Patients with breast cancer seem to rally around one another whenever a woman has to undergo a mastectomy. They knowingly share in the grief of even strangers when someone shares their ‘war stories.’ They are seen as courageous heroes for facing the unthinkable. Our ‘war stories,’ however are not seen as war stories – but ‘failure on our part stories…’ This is deeply wrong-headed… complications are much more dependent on our genetics than we think. But even if we had played a part on them, don’t we think we deserve support, forgiveness, and love?
I recall a few years ago, when I had shared some thoughts on my father’s diabetes and passing, that a fellow person with diabetes said to me: “You are not your father,” as if to suggest I can stop talking about his experiences now, and that the same will not happen to me. What he failed to understand was that no, they were not just his experiences – they were just as much my experiences as they were his… and yes, I am my father. Diabetes makes us become our fathers, or our mothers, or our spouses. We are not, somehow, insular to the experience of diabetes. No, we might not develop their complications… but it doesn’t mean that we didn’t develop our own complications: the scars of that war – of that moment – they are complications enough.
So what about our own support? What about our own advocacy? Who is going to speak and stand up for us – the people who are left behind by the aftermath diabetes? Let us pick up and care for our OWN veterans of this war… we deserve just as much support as those who are just beginning.