Written by Sierra Robertson
In 2019, I was diagnosed with Celiac Disease, a life-long autoimmune disease that causes my body to attack itself if I consume gluten. Because it’s an autoimmune condition I am also more likely to catch other illnesses and will be sicker for longer than someone with a normally functioning immune system. That same year, I received a formal diagnosis of Fibromyalgia which is a condition characterized by chronic pain throughout the body, extreme fatigue, as well as a huge amount of additional symptoms that impact every aspect of my life. Neither condition has a known cure. Needless to say, getting these diagnoses was life changing in many ways.
For me, coming to terms with my diagnoses has and continues to be full of mixed feelings. Getting a diagnosis can feel really validating, particularly after years of knowing that something is wrong but not knowing what. Depending on your experience with the medical system, getting that diagnosis can help you get access to care that you didn’t have before. On the other hand, diagnoses can be stigmatizing and potentially hinder the care you get in the medical system. I’ve experienced both ends of the spectrum in terms of medical experiences.
While I feel grateful to have a better understanding of what’s going on in my body now, accepting and learning to live with chronic illness can be really difficult. I experienced and continue to experience a sense of grief for life pre-illness as well as for the future I had imagined for myself which has been massively altered by these diagnoses. I also feel grief for the things I can no longer do because of illness. It can feel strange to call it grief because nobody has died, but I’ve come to see that grief is something you can experience for any kind of loss. And often for those of us with chronic illnesses, we experience continual losses– such as loss of mobility, the ability to go out without planning, career opportunities, friendships etc. It can feel like a never ending roller coaster of loss and grief.
In 1999, Pauline Boss coined the term “Ambiguous Loss” to describe the experiences of grieving when there isn’t finality to a loss. She later explains that people with chronic illnesses, particularly those with no known cure, often experience ambiguous loss. We are still here, but not in the ways we were before or expected to be. Our conditions and symptoms may fluctuate and so too can our feelings of hope or resignation. Boss also points out that the close friends and family of people with chronic illness can experience ambiguous loss too in relation to their loved one’s condition. They can face the same uncertainty we do about what our illnesses may mean for our shared future, and what that means for the relationship. At least for me, finding out that there is a name for the kind of grief that we as chronically ill people and our families experience feels validating. It gives recognition to an experience that can feel really hard to express.
The reality is that chronic illness changes us and continues to change us throughout our lives. It is a hard process to accept that change, and it’s reasonable to feel grief. In fact, Boss suggests that the best way to deal with ambiguous loss is to name the losses that have been experienced, while also working to figure out how to best enjoy life with the capabilities we have left. Then re-visiting that conversation as much as needed as our lives and the illness progresses or changes. This could look like having a conversation with your loved ones, talking to a counselor, journaling, or whatever other way feels right. You deserve to live your life in the midst of chronic illness, and only you get to decide what that looks like for you.