On Death and Dying<\/em><\/a>. She described five stages (denial, anger, bargaining, depression, and acceptance) that describe a process by which people deal with grief and tragedy. \u00a0Many people think of the stages of grief as just relating to loss of a loved one. These stages, however, apply to many types of loss, including divorce, job loss, dealing with terminal illness, or the diagnosis of a life-changing and life-threatening disease like diabetes.\u00a0 The stages are not in a consistent order and people may go back and forth between different stages. Also, not everyone experiences all the stages.\u00a0 The way each person experiences grief is unique.<\/p>\nOn the day I was diagnosed in 1999, I took the subway to the Toronto General Emergency Department, no longer capable of denying or dismissing the classic symptoms of diabetes that I was experiencing. I had a sense of impending doom, but at the same time I was unable to believe I could actually have that word <\/em>that had been popping into my head for months: Diabetes<\/em>.\u00a0 When the triage nurse tried to test my blood sugar, the glucose meter just read HI<\/em>.\u00a0 The staff sent my blood off to be tested but went ahead and hooked me up to an IV and insulin drip.\u00a0 I finally asked someone, \u201cDoes this mean I have diabetes?\u201d\u00a0 The answer was an awkward, hesitant \u201cyes.\u201d I remember wondering why I had to ask.\u00a0 Many years later, I know it is not okay that no one understood the importance of taking a few minutes to talk to a young woman about why she was being given insulin. The whole 24 hours I spent in the emergency department waiting to be admitted, no one explained a thing.<\/p>\nSince it was Easter weekend, it took a few days before I saw a nurse educator or endocrinologist.\u00a0 The endocrinology team was kind, and definitely inspired more confidence than the staff I had encountered on the weekend.\u00a0 Even then, though, no one told me what to expect emotionally over the days, weeks and months to come.\u00a0 Although I don\u2019t remember much about taking needles or using glucose meters, I have vivid memories of how I felt.\u00a0 I felt stunned and very alone, despite visits from concerned and caring friends and family. I cried when a resident came to tell me, on day 6, that I was being discharged. \u00a0I did not feel ready to start this new life.<\/p>\n
There are other memories that stand out.\u00a0 They are related to the way other people responded to me while I was grieving my diagnosis.\u00a0 My mother and I both felt the sting of people\u2019s attempts to be reassuring in those early days: \u201cWell, at least it is not cancer\u201d or \u201cI know so and so who has diabetes, and it doesn\u2019t seem like a big deal.\u201d\u00a0 I mention my mother because even though I was not a child anymore, she too grieved my diabetes.\u00a0 All parents do.<\/p>\n
The problem is that it really is hard to grieve when other people are telling you that you shouldn\u2019t feel so sad.\u00a0 It is also hard to process sadness when you end up feeling angry and hurt.\u00a0\u00a0 Of course, people who have not grieved the diagnosis of a life changing illness do not understand that this is what you are doing. Often the grieving people themselves do not realize what is happening.\u00a0 I know at the time I was diagnosed, I was not aware that I needed to grieve.\u00a0 My way to cope was to try to be the perfect diabetic so that I could feel the way I used to feel.<\/p>\n
This brings us to one of the stages of grief that is outlined in The K\u00fcbler-Ross model: denial.\u00a0 Denial is a temporary defense.\u00a0 Many people think, \u201cThis can\u2019t be happening to me.\u201d I remember even after I\u2019d gone home from hospital I kept having the bizarre thought that there was some reason other than diabetes that I needed to be on insulin, and wouldn\u2019t I feel so silly when I had to tell people that I wasn\u2019t really diabetic after all?!\u00a0 When this belief faded, I began to take in the reality of the diagnosis. It would hit me at different times, when I woke up for the day, shaky from a low, or when I looked at bruises from my injections or refilled prescriptions at the pharmacy.\u00a0 I am diabetic.<\/em>\u00a0 For a long time, it was hard to believe.\u00a0 Of course, eventually it became hard to remember what it was like not<\/em> to have diabetes.<\/p>\nIn recent years, in my work as a psychologist, I have watched others go through some of these stages of grief during different periods of their lives with diabetes. I remember a wonderful young woman who came to therapy because she had stopped checking her blood sugar, despite receiving continuous insulin through an insulin pump.\u00a0 Like many of my patients with diabetes, she labelled herself lazy or unmotivated. However, she was able to finally identify that denial \u2013simply not wanting to recognize her diabetes- was at the root of her behavior: \u201cI just don\u2019t want the diabetes,\u201d she said. This denial can also lead to people letting their blood glucose run high because then they can \u201cnot think about the diabetes for a while,\u201d or at least perceive themselves as relatively safe and not needing to be so vigilant about catching lows.<\/p>\n
It is very common for me to see feelings of depression or anger that are alleviated when patients actually get time in therapy to tell their stories and grieve diabetes.\u00a0 Sometimes their diagnosis happened a decade earlier, when they were too young to really understand and process the event, or they grow up, become more independent, and the impact of their diabetes is experienced in a different way. Other stressors, such as a breakup or leaving home for the first time, can also trigger a period of diabetes distress when the reality of living with diabetes seems overwhelming all over again. This is important to realize when assessing your own grief, or supporting someone else with their own loss.\u00a0 If there are other stressors or losses in one\u2019s past, the grief may be more acute.\u00a0 Loss can be cumulative. Anecdotal evidence would suggest that sometimes a very stressful or traumatic event can precipitate the diagnosis of diabetes. I have met a handful of young people who report being diagnosed within a year of their parents\u2019 divorce.\u00a0\u00a0 Of course, this other loss would add to the impact of a diagnosis of diabetes.<\/p>\n
I think sometimes when people attempt to master diabetes, it is a form of bargaining.\u00a0 For the first 6 months after diagnosis, I wrote down every blood glucose reading and carbohydrate consumed.\u00a0 I told everyone I was fine.\u00a0 I worked three jobs in the summer right after my diagnosis. Maybe I believed somehow everything would be okay if I just worked hard enough.\u00a0 I needed someone to tell me what I tell many of my patients: when it comes to diabetes, there is no \u201cperfect\u201d.\u00a0 \u00a0\u00a0When I took a break from writing down blood glucose results, I didn\u2019t want to start again.\u00a0 I realized I would be doing this forever.\u00a0 Forever is a long time to live with a disease that seemed to require endless amounts of energy and focus.<\/p>\n
Of course, all the same emotions people with diabetes experience are often felt by parents of children with diabetes.\u00a0 Anniversaries can be a tough time.\u00a0 It is normal as the one-year mark of diagnosis approaches to experience intense feelings of sadness, depression or anger. \u00a0\u00a0The symptoms of grief almost mirror those of depression and doctors may recommend medication. But if grief is the issue, therapy or increased personal support may be even more important than taking a pill.\u00a0 Insomnia, loss of appetite, mood instability, fatigue and loss of interest in your usual activities are normal symptoms of grief.\u00a0 I know in my case, the one-year mark was a very intense time during which I needed to really mourn the losses associated with diabetes.\u00a0 I didn\u2019t know what to do with a lot of the emotions and sometimes my anger came out at the people closest to me. Over time, these feelings did subside and I began to work towards acceptance of this \u201cnew normal.\u201d<\/p>\n
So what do I suggest to those are grieving, and those who want to support them?<\/p>\n