I don’t remember the first time I had to inject myself with a needle. I don’t remember being taught how to test my blood sugar. But I have many memories of being diagnosed with type 1 diabetes. In retrospect, the day of my diagnosis was the beginning of a long process of grieving my diabetes. At the time, however, I had no idea that being diagnosed with a chronic illness would involve a grieving process.
Elisabeth Kübler-Ross famously outlined the stages of grief in her 1969 book called On Death and Dying. She described five stages (denial, anger, bargaining, depression, and acceptance) that describe a process by which people deal with grief and tragedy. Many 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. 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. The way each person experiences grief is unique.
On 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 that had been popping into my head for months: Diabetes. When the triage nurse tried to test my blood sugar, the glucose meter just read HI. The staff sent my blood off to be tested but went ahead and hooked me up to an IV and insulin drip. I finally asked someone, “Does this mean I have diabetes?” The answer was an awkward, hesitant “yes.” I remember wondering why I had to ask. 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.
Since it was Easter weekend, it took a few days before I saw a nurse educator or endocrinologist. The endocrinology team was kind, and definitely inspired more confidence than the staff I had encountered on the weekend. Even then, though, no one told me what to expect emotionally over the days, weeks and months to come. Although I don’t remember much about taking needles or using glucose meters, I have vivid memories of how I felt. 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. I did not feel ready to start this new life.
There are other memories that stand out. They are related to the way other people responded to me while I was grieving my diagnosis. My mother and I both felt the sting of people’s attempts to be reassuring in those early days: “Well, at least it is not cancer” or “I know so and so who has diabetes, and it doesn’t seem like a big deal.” I mention my mother because even though I was not a child anymore, she too grieved my diabetes. All parents do.
The problem is that it really is hard to grieve when other people are telling you that you shouldn’t feel so sad. It is also hard to process sadness when you end up feeling angry and hurt. 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. I know at the time I was diagnosed, I was not aware that I needed to grieve. My way to cope was to try to be the perfect diabetic so that I could feel the way I used to feel.
This brings us to one of the stages of grief that is outlined in The Kübler-Ross model: denial. Denial is a temporary defense. Many people think, “This can’t be happening to me.” I remember even after I’d 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’t I feel so silly when I had to tell people that I wasn’t really diabetic after all?! 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. I am diabetic. For a long time, it was hard to believe. Of course, eventually it became hard to remember what it was like not to have diabetes.
In 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. Like many of my patients with diabetes, she labelled herself lazy or unmotivated. However, she was able to finally identify that denial –simply not wanting to recognize her diabetes- was at the root of her behavior: “I just don’t want the diabetes,” she said. This denial can also lead to people letting their blood glucose run high because then they can “not think about the diabetes for a while,” or at least perceive themselves as relatively safe and not needing to be so vigilant about catching lows.
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. 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. If there are other stressors or losses in one’s past, the grief may be more acute. 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’ divorce. Of course, this other loss would add to the impact of a diagnosis of diabetes.
I think sometimes when people attempt to master diabetes, it is a form of bargaining. For the first 6 months after diagnosis, I wrote down every blood glucose reading and carbohydrate consumed. I told everyone I was fine. 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. I needed someone to tell me what I tell many of my patients: when it comes to diabetes, there is no “perfect”. When I took a break from writing down blood glucose results, I didn’t want to start again. I realized I would be doing this forever. Forever is a long time to live with a disease that seemed to require endless amounts of energy and focus.
Of course, all the same emotions people with diabetes experience are often felt by parents of children with diabetes. Anniversaries can be a tough time. It is normal as the one-year mark of diagnosis approaches to experience intense feelings of sadness, depression or anger. The 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. Insomnia, loss of appetite, mood instability, fatigue and loss of interest in your usual activities are normal symptoms of grief. 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. I didn’t 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 “new normal.”
So what do I suggest to those are grieving, and those who want to support them?
If someone you know is dealing with any kind of diagnosis or illness, don’t minimize it or attempt to reassure them by telling them how much worse it can be. You don’t have to make this better. A simple: I am so sorry to hear about what you are going through is often best. Actions speak louder than words. If you can offer support in other ways, do so. Small acts of kindness go a long way. When you are grieving, it usually helps to know people are thinking about you.
If you are struggling with your diabetes, and people close to you are judgemental or hurtful in some way, you have the right to distance yourself and spend time with those who make you feel better. Your grief is unique to you and no one can tell you how you should feel. In addition to not understanding what it means to grieve, some people are busy trying to protect themselves, rather than trying to empathize. They want to convince themselves that what you are dealing with is no big deal, or that it could never happen to them.
However, give those close to you a chance to improve their communication. Assert yourself and tell them if you need a different kind of support. One of my patients said her boyfriend admitted later that when she was diagnosed in late adolescence, he tried to brush it off because he thought he would make her feel worse if he made a big deal out of it. Instead it added to her belief she had to keep a brave face.
The Role of Healthcare Professionals
The healthcare professionals who deliver the news of diagnosis and provide support in the ensuing months play a very important role. Many educate and support with wonderful compassion and understanding. Unfortunately, they sometimes miss the opportunity to provide some emotional support.
The moment of diagnosis is sometimes described as a “flashbulb moment” to the individual diagnosed. If you are a healthcare professional delivering this news, you may be remembered for the rest of that person’s life. Don’t try to gloss over the reality of living with diabetes. Patients, and certainly parents of children diagnosed with diabetes, do not need a false promise of a cure in the next ten years. Most people, whether the patient or the family of a young patient, would benefit from a true expression of sympathy and a realistic statement about what this means for their lives. For example, I am really sorry that I have to deliver this news to you. You have (or “your child has”) diabetes, and there is a lot of learning to do to manage it. However, it is possible to live a healthy, happy life with diabetes. You will need a lot of support.
Honesty and empathy needs to extend beyond that important first moment. Patients are more likely to listen to your guidance if you listen to their thoughts and feelings first. Whether you are a nurse weighing someone and checking their feet before they meet with their endocrinologist, or an educator teaching a newly diagnosed patient, or a dietician meeting about carbohydrate counting, take the time to ask about your patient’s well being (not just How are you? but something more specific like, How are you coping these days? How are you feeling about everything? If he or she has the courage to open up about how he or she is feeling, reflect back that emotion: Yes, it is hard living with diabetes. It really is a full time job. Or, you can say, You’re not alone, or people struggle with their diabetes management because it really is difficult. There is no ‘perfect’ when it comes to diabetes. Some helping professionals shy away from these remarks because they don’t seem positive enough or particularly helpful. Those with diabetes, however, know how helpful such acknowledgements can be. Even the highest performing, seemingly self-sufficient patient has his own vulnerabilities and benefits from hearing: “You are doing a good job.”
If you are caring for people with diabetes, remember to smile at them, show interest in them as people, and try to connect with them. As someone who counsels people living with diabetes and hears about their thoughts and feelings, I promise you it makes a difference. That show of empathy is a wonderful motivator and can help patients process the grief involved in their diabetes. One of my patients was in tears when she told me about the time her endocrinologist pushed aside her file and said kindly, “Tell me why you are feeling so upset.” On the flip side, most of us with diabetes can think of appointments when no one looked beyond the blood work results. This can be discouraging and lead to all kinds of negative (and perhaps unfounded) thoughts about how others view us.
When you suspect that a diabetes patient is struggling with denial, anger, depression, bargaining or acceptance, consider describing the stages of grief and their impact. Having a framework to understand the intense physical and psychological symptoms they may be experiencing is very reassuring. I also find Alan Wolfelt’s Mourner’s Bill of Rights to be helpful.
If you are supporting someone who is grieving their diabetes, tell them to expect the grieving process to be a rollercoaster ride of emotions. And maybe, whether you are a friend, family member, health care professional or someone else living with diabetes, you can tell them that you’ll be there at points along the ride.