Now, I counsel others grieving losses associated with diabetes and other chronic illness. I learn a great deal from their stories.
Many people think that the grieving process only relates to the loss of a loved one. However, these stages (denial, anger, bargaining, depression, and acceptance) apply to many types of loss. Divorce, job loss, or the diagnosis of a life-changing and life-threatening disease like diabetes can all require adjustment. The stages are not in a consistent order, and people may go back and forth between different stages. Not everyone experiences all the stages. The way each person grieves is unique.
On the day I was diagnosed, I was 24 years old and knew something was very wrong. Still, I was unable to believe I could actually have that condition – diabetes. For months, I had been denying that I was sick despite serious symptoms. Kind and caring health professionals were there to help. Still, no one told me what to expect emotionally over the days, weeks and months to come. I felt stunned and very alone, despite visits from caring friends and family. I cried when a resident came to tell me that I was being discharged. I did not feel ready to start this new life.
After diagnosis, I entered a new stage of denial. The whole time I was in hospital and for a week or two after going home, I believed a mistake had been made. There had to be a reason I would need insulin other than diabetes. Looking back, this makes no sense at all! My biggest worry was how embarrassed I would feel when people found out I did not have diabetes after all. Denial protects the mind from realities it is not ready to accept yet.
A yoga teacher diagnosed with LADA (latent autoimmune diabetes in adults) told me that she spent five years in denial. Her onset was slower than other people with type 1, and that is what distinguishes LADA from type 1. However, she reached a point where taking insulin became necessary. Her blood glucose was consistently elevated. She was in denial, believing instead that she had a parasite. Surely a healthy lifestyle would cure her. Once she accepted she needed to start insulin, she cried for two weeks. She was finally moving forward in her grieving process.
Certain memories of the grieving process stand out for me. They involve the way other people responded to my diagnosis. Though comments were meant to be reassuring, they still stung. “Well, at least it’s not cancer!” or “I know somebody with diabetes, and it doesn’t seem like a big deal.”
It can be difficult to process grief when others are saying that you shouldn’t feel sad. You end up feeling angry and hurt. Those who have not grieved the diagnosis of a life-changing illness cannot understand. Often the person who is grieving does not realize what is happening. Although I was studying psychology in university, I did not recognize that I was grieving! My way to cope was to try to manage my diabetes perfectly, so I could feel the way I used to feel. If I just did it right, everything would be okay.
Once this bargaining stage faded, the reality of the diagnosis began to sink in. It would hit me at different times – when I woke up for the day shaky from a low, or looked at bruises from injections, or refilled prescriptions at the pharmacy.
I have diabetes. For a long time, it was hard to believe. Of course, eventually it became hard to remember what it was like before diabetes.
Sometimes our attempts to master diabetes can be a form of bargaining. For the first six months after diagnosis, I wrote down every blood glucose reading and carbohydrate consumed. I told everyone I was fine. I worked three jobs 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 others learning to cope – when it comes to diabetes, there is no perfect. When I took a break from writing down blood glucose results, I did not want to start again. I was suddenly overwhelmed by the thought of doing it forever.
Now I counsel people with diabetes. Though many label themselves as lazy or unmotivated, it is not that simple. For instance, depression can sap people of the energy needed to manage diabetes. Denial can also be the root of problematic behaviour. You don’t want to believe you have diabetes, so you skip injections. You don’t want to think about it, so you ignore or refuse to even check your blood glucose levels.
Often, feelings of depression or anger diminish once people have the chance to discuss and grieve their diabetes. Some have waited a long time to tell their stories. For others, a significant stressor such as a relationship breakup triggers a period of diabetes distress. The reality of living with diabetes becomes overwhelming again.
Losses can add up, one loss onto another. Many people are diagnosed within a year or two of a traumatic event in their family. Of course, the first loss adds to the impact of diabetes diagnosis.
Anniversaries can be tough. As the one-year mark of diagnosis approaches, it is normal to experience intense feelings of sadness, depression or anger. As symptoms of grief are much like those of depression, doctors may recommend medication. But if grief is the issue, therapy or increased personal support may help more than taking medication. Insomnia, loss of appetite, unstable mood, fatigue, and loss of interest in usual activities are normal symptoms of grief. In my case, the one-year mark was a very intense time. I really needed to mourn the losses associated with diabetes, and did not know what to do with those emotions. With time, the feelings lessened. I was able to work towards acceptance of a new normal.
You may be struggling with your diabetes, and find that people close to you are judgmental or hurtful in some way. Remember, 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.
However, give those close to you a chance to improve their communication. Assert yourself. Let them know that you need a different kind of support. Many young adults I work with say their parents are supportive, but do not provide the right type of support. They must explain that they need more listening, and less advice. If parents can honour this request, it can be easier to accept advice when it is truly needed.
If someone you know is dealing with any kind of diagnosis or illness, do not minimize their distress. It is not reassuring to hear that it could be worse. Often, it is best to say simply, “I am so sorry to hear about what you are going through.” Actions speak louder than words, and small acts of kindness go a long way. If you can offer support in other ways, do so. When a person is grieving, it is nice to have someone who will just be there. Take a moment to listen to Brené Brown’s work on empathy in her online Ted Talks. This can educate you on how to truly support others.
Health care professionals who deliver the news of a diagnosis have a very important role. Diagnosis is sometimes described as a ‘flashbulb moment’ to the person hearing it for the first time. It is traumatic and scary. If you are the one delivering this news, this person may remember you forever. Do not try to gloss over the reality of living with diabetes. A false promise of a cure in the next ten years will not help. People being diagnosed and those supporting them need an expression of empathy, and a realistic statement about what this diagnosis means. For instance:
“I am really sorry that I have to deliver this news to you. The diagnosis is 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 must extend beyond that first key moment. Patients are more likely to listen to your guidance if you listen to their thoughts and feelings first. Whether you are a nurse doing a simple check, an educator teaching a newly diagnosed patient, or a dietitian meeting about carbohydrate counting, your approach matters.
Take the time to specifically ask about your patient’s well-being.
“How are you coping these days?”
”How are you feeling about everything?”
If your patient has the courage to open up, reflect those feelings back.
“Yes, it is hard living with diabetes. It really is a full time job.”
“People struggle with 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 do not seem positive or particularly helpful. However, those with diabetes know how helpful a realistic acknowledgement can be. Even the highest performing, seemingly self-sufficient people have their own vulnerabilities. Hearing that they are doing a good job makes a difference.
When you care for people who have diabetes, remember to smile at them. Show interest in them as people. Put aside the file and just talk about how they are doing. I promise you these simple actions can help you to connect, and make a difference.
If you suspect that a person who has diabetes is struggling with denial, anger, depression, bargaining or acceptance, consider describing the stages of grief and their impact. It is very reassuring to have a framework to understand the intense physical and psychological symptoms you are experiencing.
As you grieve your diagnosis, expect the process to be a rollercoaster ride of emotions. If you are a friend, family member, or health care professional, provide reassurance that you will be there to lean on.