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Chronic Illness Diagnosis: Grieving Yourself and Coping with the Loss of Self-Identity

Receiving a chronic illness diagnosis is a life-changing event. Though managing the physical symptoms of the illness plays a significant role, the largest battle often involves grappling with the emotional and psychological impact of the diagnosis.

Oftentimes, having a sudden shift in our physical health and well-being can feel like we lose a piece of ourselves, along with our sense of control and identity. This is especially true if the chronic illness diagnosis impacts our abilities, challenges our sense of purpose, or completely redefines how we live our life.

This article will highlight the intricacies of chronic illness, including common challenges faced when adjusting to a new reality following a diagnosis. Most importantly, we will explore the reality of chronic grief caused by illness, how it impacts our sense of self, and coping strategies that guide us toward a happier, healthier self.  

How a Chronic Illness Diagnosis Affects Your Identity

Chronic illness is defined as a long-term medical condition that often requires ongoing medical care, management, or medications to slow the progression of symptoms. Some common chronic illnesses include cancer, diabetes, heart disease, arthritis, multiple sclerosis, diabetes, autoimmune disorders, and asthma.

Receiving a chronic illness diagnosis can be an incredibly challenging emotional experience. It may come as a complete shock to a person, causing a flood of intense feelings to wash over their bodies as they try to process their diagnosis. Feelings of sadness, anger, fear, and even denial are all common during these initial stages of processing.

Chronic Grief

Eventually, we arrive at grief.

There are many facets of ourselves that can be grieved following a clinical chronic illness diagnosis: our bodies, our emotions, feelings of hopefulness, the trust we once had for our health and well-being, our careers, our independence, and our sense of control.

One may also experience perpetual or chronic grief with a diagnosis. This type of grief happens when there is not one specific event of loss, but rather a repeated experience of intense reactions that never seem to resolve over time.

Stigmatized Identity

Research has previously explored that a chronic illness diagnosis can lead to stigmatization, even when the illnesses are not visible to others, such as rheumatoid arthritis. This stigma can cause individuals to feel like they have a “stigmatized identity”. In other words, a chronic illness diagnosis has a way of causing us to feel shame, embarrassment, or isolation – even if it’s internalized.

The experience of a stigmatized identity can be distressing, as it has a way of impacting our self-esteem, confidence, and sense of self-worth.

The Role of a Chronic Illness Diagnosis in Relationships

A chronic illness diagnosis can put a strain on relationships, making it more challenging to socialize with friends and family or deepen connections with our significant others.

Here are some ways that chronic illness can impact romantic relationships:

  • Emotional strain: A chronic illness diagnosis can cause emotional strain between both partners. On one hand, the person with the illness may feel frustrated, scared, or guilty about their condition, whereas their partner may feel overwhelmed or worried
  • Changes in intimacy: Both physical limitations and certain medications can affect a person’s libido and ability to engage in acts of intimacy, as does the illness’s affect on psychosocial well-being
  • Creating a new daily routine: Chronic illness comes with changes in our daily routine, such as starting or changing medication schedules, doctor appointments, diet and exercise restrictions, and so on

Research has noted that individuals and their partners may adapt at different rates to their situation. Though some partners experience an enormous amount of emotional overwhelm due to their new caregiving requirements, this is not the same for everyone.

Coping Strategies to Combat Loss of Self 

Coping with the loss of self and all the many other challenges involved is an ongoing process. That being said, there are plenty of effective coping strategies that can help alleviate the pain and chronic grief that may surface along the way.

Here are 5 coping strategies we recommend to help you combat loss of self:

1.   Build a Support System

A strong support system is integral to improving our resilience during difficult times. Reaching out to friends, family, or support groups who share similar experiences can offer emotional support and practical help.

Something as simple as venting to a trusted friend can alleviate feelings of loneliness, isolation, and even depression. Similarly, having practical support, such as having someone who is able to drive you places, help you with daily tasks, or assist with meal preparation can help minimize stress and improve our sense of control or security during these challenging times.

2.   Practice Self-Care

Self-care refers to a set of practices or activities that boost physical, mental, and emotional well-being. Self-care is especially important for individuals with a chronic illness diagnosis, who need to manage their health and symptoms on a daily basis, and who may experience more stressors associated with their condition.

Though self-care looks different for everyone, the techniques that work best in relieving your stress and boosting your well-being often generate happiness, improve your self-esteem, and enhance your quality of life. Some examples include reading, spending time in nature, or participating in hobbies or creative pursuits that inspire motivation and generate joy.

3.   Stay Informed on Your Chronic Illness

Continuously educating yourself about your condition, including treatment options and lifestyle changes can be incredibly beneficial in managing your symptoms. Not to mention, staying informed can give you a sense of control over your health.

There are many ways you can stay up to date on your chronic conditions. Some examples include consulting with healthcare professionals, taking the time to research your condition, attending support groups, and finding other online resources or apps such as symptom trackers or telemedicine services for reliably-sourced information, tips, or updates. 

4.   Practice Mindfulness 

Mindfulness is a mental state that helps us bring our conscious awareness to the present moment. When we practice mindfulness, we are able to experience our thoughts, feelings, and bodily sensations fully without attempting to judge or interpret them.

When it comes to grieving ourselves, mindfulness exercises help us effectively manage stress and anxiety while challenging our negative thoughts and promoting greater emotional balance, self-compassion, and relaxation.

Mindfulness can be cultivated in many ways including meditation, deep breath work, or mindful movement practices like yoga or tai chi. There is even a range of mindfulness exercises for couples that help improve connection, build trust, and relieve tension both individually and within your partnership.

5.   Seek Professional Help

Counselling is a beneficial avenue to help work through and minimize symptoms associated with a chronic illness diagnosis. Similar to how your doctor can assist in physical symptom management, a licensed therapist specializes in managing the emotional or psychological impact of the illness.

Therapy offers a safe and supportive environment to allow for the expression and processing of feelings accompanying the illness including anxiety, anger, frustration, or sadness. Therapists are trained to develop coping strategies such as stress management techniques, relaxing exercises, and cognitive behavioural strategies to address and overcome negative thought patterns related to chronic grief.

The Bottom Line

Grieving the loss of self following a chronic illness diagnosis can be life-changing. Oftentimes, it involves finding ways to maintain a sense of identity and purpose despite being faced with ongoing challenges and major life changes that accompany the illness.

Coping with loss requires a combination of self-compassion, resilience, and willingness to adapt. Having support from loved ones and healthcare professionals is influential in maintaining a strong sense of self.

It’s important to remember that coping with a chronic illness diagnosis is an ongoing, ever-evolving process. Be patient and kind to yourself as you navigate your next steps.

When you’re ready, we are available to provide support. Click here to book a free consultation with one of our licensed mental health professionals.

Written by Laura Anderson BA, MA, MSW, RSW

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