Gary McClain, PhD, is a therapist, patient advocate, and writer who specializes in helping clients—as well as their family members and professional caregivers—deal with the emotional impact of chronic and life-threatening illnesses.
I know this is pretty dark topic. And a hard one to write about with my usual upbeat message. But recently, clients have told me about the loss of a friend or family member – or someone they read about – who was living with the same condition, or a similar one, and how the news was affecting them. I have also been in touch with members here on Diabetic Connect who have been through this experience. And we have lost members over the years.
One client wanted to talk about a friend he had made through an online support group. They were living with the same condition, with similar treatment plans. Here’s what he said:
“We have been in touch every day or two for the last couple of years. He’s had some rough spots, more than I have. During those times, I might not hear from him for a week or so. Then he would be back. This time a couple of weeks went by. I kept emailing and nothing. Then I got a message from a family member telling me he had some complications and didn’t make it this time.
“I don’t know how to react,” he said. “I can’t think about him without thinking about myself. It brings up a lot of fear. And questions. Like, is this the right medication? And was he really taking care of himself? It’s like I almost want to make his death his own fault. And I know that’s not fair.”
I often encourage my clients who are living with a chronic condition to not focus on limitations, but instead to focus on what’s possible. And when I use that word, I mean the good things in life, like friends, family, staying as active as possible, and doing things they enjoy. Not on the possibility of decline.
Clearly some conditions are more life threatening than others. Many conditions, like diabetes, can usually be controlled by staying compliant with medications and maintaining a healthy lifestyle. (And yes, not everybody does that.) For other conditions, the outcome is not so certain, but many patients are recovering with treatments currently available. And then, some conditions may cause discomfort or pain, and progress over time.
The possibility also exists of being diagnosed with multiple conditions, which can leave someone that much more vulnerable to further illness. And some people respond more favorably to the medications than others do, and the treatments themselves can leave them susceptible to additional diagnoses.
What I am saying is that there are many reasons why someone might die of – or with – a diagnosis you share. And at the time you learn of their death, the reasons may not be so clear, if they will ever be. Or the cause of death may be very clear.
Either way, that can be a lot to have to sit with.
As my client said, learning that someone has died from your condition brings up a range of feelings. One of them is fear. You may already be dealing with your own fear factor. Or maybe you thought the fear was behind you, or tucked away, only to find its way back. Another is guilt. Guilt about doing well when clearly someone else wasn’t. You may feel some guilt if you find yourself explaining away their death with thoughts of what they might not have done to take care of themselves. And how about anger when you are again reminded about the unfairness of life?
Let me say this: It’s only human to have feelings that are all over the place. Learning about a death has a way of doing that to us. It’s pretty high on that list of things we would rather not think about at all. Until we have to.
So where does that leave you if have learned of someone dying from the same condition that you are living with?
First, let yourself feel. As I said, a lot of feelings may come up for you. They’re only feelings. And they’re normal, so don’t judge yourself. And don’t hold them in where they can build up and result in stress. Release them into the light of day.
Get support. Find a safe place to talk about how you feel. Even if the person who has died is not close to you, it’s still a loss in its own way. Sit down and talk it out with someone who can listen without trying to tell you what you should do. Saying it out loud can help you sort out your thoughts and feelings.
Accept that life is uncertain. If you’re living with a chronic condition, chances are you have already come to terms with the changes that life can bring, whether you’re ready for them or not. But knowing that the person who passed was living with your condition can give additional meaning to uncertainty.
Know that you can’t always know. It’s only human to have questions and want answers. Why did this happen? Were there complications? A related condition? Were the medications working? Were compliance and self-care on track? You may have answers to these questions. But you may not.
Review your foundation. Talk back to the fear factor by reminding yourself of your strengths: A physician you trust. Family and friends. Complying with your treatment regimen. Following your self-care routine. Your spiritual connection. And whatever else you have put into place to keep yourself grounded when things feel shaky.
Have a talk with your doctor. Most likely, the news of a death can bring up concerns about your own future. Again, that’s just being human. So sit down with your doctor and review your treatment plan. Ask questions. Get some reassurance that you are doing everything you can to stay healthy. And if not, see what changes you need to make going forward.
Recommit to your own self-care. Another lesson that chronic conditions teach us is that we are not in control of everything in life. However, what you do have control over is maintaining your own wellness. This is a good time to recommit to taking the best possible care of yourself.
Reach out for help if you need it. What was it like for you when you were first diagnosed? Maybe you pretty much sailed through this process – you got the news, you got your treatment plan underway, you stayed optimistic. Knowing someone with your condition who has died can bring up feelings that you didn’t experience when you were first diagnosed. A delayed reaction can hit you hard. If so, this is a good time to sit down with a mental health professional to sort your feelings out and learn some new coping skills. Don’t go through this alone.
Remember to embrace the day. Every morning, think of something to be grateful for. Treat others with kindness. Be good to yourself. We can honor those who have passed on by making the best of each new day, another opportunity to be the best we can be in life.
The events of life remind us of just how precious life is. Work closely with your healthcare professionals. Stay on top of your treatment regimen. Get lots of support. And take good care of yourself. Always.