I often hear people say “health as well,” but what does that mean for those of us who have lost our good health? Living with chronic illness, I’m no stranger to loss. Since my diagnosis, I’ve experienced losses, big and small, that have deeply affected my quality of life. Unlike other losses, the kind that come with chronic illness are ongoing — a drawn-out process, especially when you’re diagnosed young.
When I was diagnosed with rheumatoid arthritis (RA) at age 29, I began to experience losses I never thought I’d face. I’ve lost friends, family, career opportunities, and even the chance to have more than one child. I’ve lost self-confidence, a lot of sleep, and sometimes, all hope. Coping with these emotions and finding a way out of the darkness has been one of the hardest parts of this journey.
Forms of Loss
Coping with the various forms of loss that accompany chronic illness is a continuous journey, one that requires resilience, adaptability, and self-compassion. It takes a lot of uncomfortable emotions to have to shift through and make sense of. While I may not have the perfect answer, over time I’ve come to understand my experiences and have developed strategies for navigating the losses that come with chronic illness. It’s never perfect, but if I’m going to be “the sick girl,” I might as well kick ass at it by trying my hardest.
Physical Loss
One of the most profound losses I’ve experienced due to chronic illness is the loss of physical abilities. Some might assume that losing abilities means losing the ability to walk or a limb, but with a disease like RA, it’s more complex. My struggles with my abilities stem directly from my symptoms. I’ve lost the ease of doing things without needing to carefully consider every move I make each day.
Activities that once came effortlessly now require meticulous planning — like attending a concert or a night out with friends — and sometimes, more often than I’d like, they’re not possible at all. Whether it’s the simple pleasure of going for a walk, engaging in sports, or even managing daily tasks, the limitations imposed by chronic illness can be incredibly frustrating and unpredictable.
I often grapple with internalized ableism, comparing myself to others. This constant comparison can lead to feelings of inadequacy and self-doubt, making it difficult to appreciate my own unique strengths and progress.
Emotional Loss
Living with a chronic illness also brings significant emotional losses that are hard to process. Grieving the person I used to be — the person before illness — is a constant. I feel this loss in daily activities and milestones that once felt effortless.
There’s also the emotional toll of dealing with the uncertainty and unpredictability of symptoms, which can lead to sadness, frustration, and hopelessness. Each day can bring new challenges, making it hard to plan for the future or even enjoy the present. I often feel afraid of what’s next, wondering what else I might lose and when. The chronic nature of my illness means these emotional struggles aren’t fleeting but persistent, requiring continuous resilience and support.
Social Loss
Chronic illness also affects social relationships. Friends and family may not fully understand the extent of my condition, leading to feelings of isolation and loneliness. Social engagements often need to be canceled or rescheduled, which can strain relationships and lead to a sense of disconnection.
Financial Loss
Living with a chronic disease often means limited financial resources, making financial losses especially difficult. Ongoing medical expenses and an inability to work full-time can quickly deplete savings, leaving us vulnerable to financial instability. Over time, these challenges build up, severely impacting overall financial well-being.Loss Is Inevitable
Loss is a part of life; none of us go through it without losing something important. I carry a sadness that I may never fully release, but over time, I’ve learned to live with it. Despite the many losses, living with chronic illness has also led me to find new meaning and purpose. I’ve become more attuned to my inner strengths and resilience. Loss has changed me — in both good ways and bad.
Coping with Physical and Emotional Loss
To cope with physical losses, I’ve learned to listen to my body and respect its boundaries. Prioritizing tasks and pacing myself have become essential strategies. I’ve also sought out alternative activities that match my abilities. While I may not be able to run far or long, I enjoy the elliptical, swimming, gentle yoga, and stretching. Celebrating small victories and focusing on what I can do, rather than what I can’t, helps me keep a balanced outlook.
Engaging in creative pursuits like writing, art, or gardening helps me express my emotions and find peace. Volunteering, advocacy, and helping others facing similar challenges have given me a sense of fulfillment and purpose. I feel less alone when I share my challenges with others who truly understand because they live with them, too.
Seeking support from friends, family, and health care professionals has created a network of encouragement and understanding that I rely on.
Finding Meaning and Purpose
Finding new sources of meaning and purpose has been essential in redefining what a fulfilling life looks like for me. The emotional landscape of chronic illness is complex, demanding strength and endurance. Navigating physical limitations, managing emotional challenges, and maintaining social connections each present their own struggles. But through these trials, I’ve discovered my inner strength and capacity for growth.
Embracing self-compassion has been crucial, allowing me to be gentle with myself during difficult times and to recognize my own worth despite the limitations of my illness. While this journey is undoubtedly challenging, it’s also been a profound opportunity for personal development and resilience, teaching me that even with chronic illness, it’s possible to continue living a fulfilling and meaningful life.
Check Out Remission Possible
Our Remission Possible podcast is dedicated to guiding and supporting you on your mission to take back your life and control symptoms. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. Listen now.
