Navigating Grief and Loss: The Emotional Journey of Chronic Illness

In my last blog post I mentioned going through a grieving process when you get a diagnosis of a chronic illness or multiple chronic illnesses. I wanted to continue that conversation in this blog post because I think it’s important to acknowledge and talk about. As I’ve mentioned before, living with a chronic illness is a life-altering experience that can bring about a multitude of challenges. Beyond the physical symptoms and medical treatments, individuals facing chronic illness often grapple with profound grief and loss. The diagnosis of a chronic illness can trigger a range of emotions as one comes to terms with the changes it brings and mourns the life that they once knew or mourns the life that they could have had without the illness. I wanted to explore these experiences of grief and loss further that accompany a chronic illness diagnosis and offer insights into navigating this complex emotional journey.

There are multiple grief theories and models; most notably, Kubler-Ross’s stages of grief. However, there isn’t necessarily one model or theory that will describe everyone’s experience. Also, the grief and loss we can experience isn’t necessarily carved out in stages. We don’t move through things in a step-by-step manner and we don’t have to “complete” one stage in order to move on to another. These feelings of grief and loss can be cyclical or ebb and flow. You may also feel fine for a long period of time and then all of a sudden you experience a flare or obtain a new diagnosis and you are back in the thick of all of the emotional fog. All of these experiences are valid and each person’s experience is their own. Generally speaking, many individuals go through a variety of feelings.

One feeling that is common is shock. Receiving a chronic illness diagnosis can be a profound shock to the system physically, mentally, and spiritually (not talking specifically about religion here but more like your spirit; who you are as a person). It shatters the illusion of invincibility and confronts individuals with their own vulnerability. Initially, there may be a sense of denial, disbelief, or even anger. You may even begin the bargaining process with a higher process, others, or yourself. It is essential to acknowledge these emotions and give yourself permission to experience them fully.

Another feeling that can be common is sadness over the loss of your health. The onset of a chronic illness often signifies a loss of physical well-being. The person you feel like you once were may feel like a distant memory as symptoms and limitations take hold. It is common to mourn the loss of your former self and to experience sadness about the loss of activities, abilities, and dreams that may now be out of reach or that may seem to be out of reach. Allow yourself to express this sadness and acknowledge the pain associated with these losses.

A third feeling that can pop up is frustration. As the reality of chronic illness sets in, we often must adjust to a new way of life. This adjustment may involve making significant lifestyle changes, such as modifying daily routines, adapting to new treatment plans, and reevaluating personal and professional goals. This is so frustrating because it throws a wrench into our life plan and kinks the crap out of it. Humans in general don’t like change and any kind of change can be a frustrating process. It is important to be patient with yourself during this transition and recognize that adaptation takes time.

In addition, the grief and loss process feels like an emotional roller coaster. The emotional journey of chronic illness is often a never-ending roller coaster ride. By the way, I am not a fan of roller coasters. This coaster includes a range of emotions including sadness, anger, frustration, fear, and anxiety. It is crucial to create a support system of loved ones, friends, or support groups who can provide understanding and empathy during the challenging times. Also, seeking counseling or therapy can also be immensely beneficial in processing these emotions.

Speaking of creating a support system, unfortunately, we may also have to go through the grieving process over losing relationships and social connections. Let’s face it, chronic illness can strain relationships and social connections. Friends and family may struggle to comprehend the extent of your illness or the impact it has on your life. This can lead to feelings of isolation, loneliness, and loss. It is important to communicate your needs to loved ones and seek out supportive communities, both online and offline, where you connect with others who share similar experiences. It’s the main reason I started this blog.

Lastly, many times, those of us with a chronic illness begin the cycle of anticipatory grief as we begin to grieve for the future. Living with chronic illness often involves anticipating future losses, such as worsening symptoms, disease progression, or increased dependency on others. This anticipatory grief can be an ongoing source of emotional distress. Developing coping strategies, such as mindfulness, self-care, and seeking professional support, can help us manage the anxiety and sadness associated with this cycle and help us to break away from living in the future rather than the present.

While a chronic illness does bring significant challenges and feelings of grief and loss, it can also serve as an opportunity for self-discovery and personal growth. As you navigate the emotional journey of grief and loss, it is important to seek out new sources of meaning and purpose. This might involve exploring creative outlets, advocating for yourself and others with similar conditions, or finding solace in spiritual or philosophical beliefs.

Experiencing grief and loss when diagnosed with a chronic illness is a natural and deeply personal process. It is important to recognize and honor those emotions while seeking support from loved ones, professionals, and communities. Remember, you are not alone on this journey. By acknowledging and navigating the emotional challenges, you can find new ways to embrace life and discover resilience in the face of adversity.