Written by Stephanie Byfield, Death Doula
Stephanie views life through the perspective of death. As a Death Doula, Death Educator, Grief Specialist, and a psychospiritual therapist in the making, Stephanie strives to make the topic of grief, death, and dying more mainstream.
I am dying! Yes, you read that right. Death is an uncomfortable subject to talk about. We tend to avoid the topic of death like the plague, or in more disgusting terms, we avoid it like grandma’s fruit cake. We all die at some point. It is a part of our lifecycle: we are born, we live, and we die.
Do we avoid talking about death due to its unknown nature? Is the fear of the uncontrollable that scares us to ‘death’? Maybe the million different possibilities in which we can die will turn us away from the topic. Sorry to break it to you, but we are all going to die.
Why am I writing this article? Simply put, I am dying! Not in the global perspective of death, as it happens to all of us. I am writing this article to give a voice to those of us who have been diagnosed with a life-limiting disease or condition.
I live with Systemic Lupus Erythematosus or Lupus. For those of you who are Seinfeld fans, cue George Castanza’s ‘Is it lupus’ joke here. People who live with lupus have a hyperactive immune system. Before I go any further, I would like to point out that this is not beneficial. Quite often, people will think that since our immune system is in overdrive, it means that we never get sick. This is the opposite of what happened. Our immune system cannot distinguish between healthy cells versus invader cells (i.e., a virus). Regardless of whether the cells produce muscle tissues or cells that make up the COVID-19 virus, a lupus body cannot tell the difference. Our immune system is in attack mode 24 hours a day, 7 days a week, 365 days a year. We may appear ‘normal’ on the outside. But, internally, we’re a hot mess!
Living with a life-limiting disease or condition brings about certain challenges that are not often discussed. When someone receives a life-limiting diagnosis, their perspective on life changes. We begin to grieve the life that we thought we were going to live. We mourn the loss of our health. We think about all the goals we want to accomplish and realize there is a good chance they will not come to fruition. We think about the eventual loss of independence as our disease or condition progresses. We stress over our appointments, the constant poke of needles, and remembering to take our medications, but most importantly, we worry about our family and friends and the legacy we will leave behind. For some, life becomes a death sentence. When people live with a life-limiting illness or condition, they face the harshest form of reality!
There are days when we feel great. Everything seems to be in working order. Then, there are days where simple tasks like getting out of bed are not an option. But yet, we keep pushing, we keep smiling, and we continue to act like there is nothing wrong. We blend into society, going through the motions of life. Until I was open and honest about my health, people would crack jokes about my tardiness and absenteeism. People often called me out for bailing on outings or special events at the last minute. When you live with a life-limiting disease or condition, your life is highly unpredictable! You could feel somewhat okay at 8:00 a.m., feel like complete garbage by 8:05 a.m., and by 8:15 a.m., you feel like running a marathon. It is tough to make plans when you have no control over the disease or condition. Over time, you learn to go with the flow and listen to your body. Unfortunately, our bodies do not always agree with what our brain wants or what society expects us to do.
There are a few things that I have learned while living with a life-limiting disease. First, saying the word ‘no’ and sticking to it makes a difference. Initially, I thought I was being selfish by saying ‘no.’ I would feel guilty for not attending a birthday party or a movie night at a friend’s house. When you live with a life-limiting disease or condition, putting yourself first is one of the easiest ways to navigate through your journey. Learning to prioritize what is important to you can provide you with a sense of peace. Second, be open and honest with the people who support and love you. It is okay to express your anxiety, fears, and doubts. It is ok to be vulnerable. Believe it or not, you do not always need to be the strong one. Third, Live Your Life! Your time may be limited, but you are not dead yet. Choose to live your life to the fullest while you still have time. Eat ice cream at 2:00 a.m.; go skinny-dipping in a large body of water; laugh at stupid potty humour jokes, etc. My personal favourite is laughing at myself. Like everyone else, I am not perfect. Sometimes, laughing at yourself and not taking life so seriously can give a person a sense of joy.
So I am dying, and we are going to talk about it! If you care about someone who is living with a life-limiting disease or condition, do not be afraid to talk about it. Let that person know that you are there for them. If you are a person living with a life-limiting disease or condition, I hope that some of this resonated with you. You are the author of your story. Do not be afraid to share your thoughts with others.
Read more from Stephanie Byfield
Stephanie Byfield, Death Doula
Stephanie Byfield is a compassionate and dedicated Death Doula, Grief and Bereavement Specialist, and Death Educator. With a deep commitment to supporting individuals through end-of-life transitions, Stephanie offers guidance, comfort, and education to those navigating death, grief, and loss. Through her work, she empowers clients to face these challenging moments with dignity and understanding, providing emotional support for both individuals and families. Stephanie is passionate about raising awareness of death literacy and helping others approach death with openness, compassion, and preparedness.
