Living with Chronic Illness

Living with a chronic illness is a journey filled with challenges. The physical symptoms can be overwhelming, but the emotional toll is equally significant, and it’s easy to feel isolated and misunderstood.

Understanding the Intersection of Chronic Illness and Mental Health

Chronic illness doesn’t just affect the body; it impacts the mind and spirit as well. Living with a chronic condition means constantly managing symptoms that may never fully resolve.

The unpredictability of these symptoms can create anxiety and stress, leading to a constant state of vigilance.

Functional Neurological Disorder (FND) is another layer of complexity. FND occurs when the brain has difficulty sending and receiving signals to and from the body. This can result in symptoms that mimic neurological disorders, such as seizures, paralysis, or difficulty walking, without a clear physical cause.

Somatoform disorders, including health anxiety, involve a preoccupation with physical symptoms that cannot be fully explained by a medical condition.

The mind becomes hyper-focused on bodily sensations, often amplifying them and creating a cycle of fear and anxiety. This hypervigilance can lead to a worsening of symptoms, creating a vicious cycle that is hard to break.

My Personal Experience with Chronic Illness

My journey with chronic illness began in childhood, though it took years to receive a proper diagnosis. Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS) are often misunderstood and misdiagnosed, leading to years of uncertainty and frustration. POTS is a condition where the autonomic nervous system doesn’t function properly, causing an abnormal increase in heart rate when standing up. This can lead to dizziness, fainting, and fatigue. EDS, on the other hand, is a connective tissue disorder that affects the skin, joints, and blood vessels. It causes hypermobility, frequent joint dislocations, and chronic pain. As a result, I have many other related struggles such as peripheral neuropathy, interstitial cystitis, hidradenitis, and have had to undergo orthopedic surgeries.

Living with these conditions means constantly managing a wide range of symptoms.

Some days are better than others, but there is always an underlying sense of uncertainty. I never know when a symptom might flare up or how severe it might be. This unpredictability can lead to a heightened sense of anxiety.

For me, the emotional impact of these conditions has been just as challenging as the physical symptoms.

The fear of the unknown, the frustration of not being able to control my body, and the isolation that comes from living with these conditions all take a toll. Over time, I’ve learned that managing these emotions is just as important as managing the physical symptoms.

The Role of DBT in Managing Chronic Illness

Dialectical Behavior Therapy (DBT) has been a crucial part of my journey in managing chronic illness. Originally developed for individuals with borderline personality disorder, DBT has since been adapted for a variety of conditions, including chronic illness. The core components of DBT—mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness—are invaluable tools for managing the emotional challenges of chronic illness.

Mindfulness: Staying Present in the Moment

Mindfulness, the practice of staying present and fully engaging in the current moment, has been especially helpful. When living with chronic illness, it’s easy to get caught up in worrying about the future or ruminating on past experiences. Mindfulness helps me focus on the here and now, reducing the intensity of my anxiety. It allows me to observe my thoughts and feelings without judgment, giving me the space to respond rather than react.

Distress Tolerance: Surviving the Moment

Distress tolerance skills have been essential for managing the intense emotions that come with chronic illness. When symptoms flare up, it can feel like everything is spiraling out of control. DBT teaches practical strategies for tolerating distress without making the situation worse. Techniques like deep breathing, grounding exercises, and self-soothing have helped me ride out the storm until the symptoms pass.

Emotion Regulation: Finding Balance

Emotion regulation is another key component of DBT. Chronic illness often brings a rollercoaster of emotions, from frustration and anger to sadness and fear. DBT teaches skills for identifying, understanding, and managing these emotions in a healthy way. By learning to regulate my emotions, I’ve been able to reduce the intensity and duration of my emotional reactions, making it easier to cope with the ups and downs of chronic illness.

Interpersonal Effectiveness: Navigating Relationships

Finally, interpersonal effectiveness skills have helped me navigate the complex relationships that come with chronic illness. Chronic illness can strain relationships with family, friends, and healthcare providers. DBT teaches skills for communicating effectively, setting boundaries, and advocating for my needs. These skills have been invaluable in maintaining healthy relationships and getting the support I need.

The Role of ACT in Managing Chronic Illness

Acceptance and Commitment Therapy (ACT) has also played a significant role in my journey. ACT is a mindfulness-based therapy that focuses on accepting what is out of our control and committing to actions that align with our values. This approach has been particularly helpful for managing the psychological aspects of chronic illness, including health anxiety and somatoform disorders.

Acceptance: Embracing What Is

One of the core principles of ACT is acceptance. For me, this has meant accepting that my chronic illnesses are a part of my life. Acceptance doesn’t mean giving up or resigning myself to a life of suffering. Instead, it means acknowledging reality as it is, without trying to fight against it. By accepting my conditions, I’ve been able to stop expending energy on trying to control the uncontrollable and instead focus on what I can change.

Cognitive Defusion: Changing the Relationship with Thoughts

Cognitive defusion, another key component of ACT, has been instrumental in managing health anxiety and somatoform disorders. Defusion involves changing the way we relate to our thoughts, so they have less power over us. Rather than getting caught up in catastrophic thinking, ACT teaches us to observe our thoughts without getting entangled in them. This has helped me reduce the intensity of my health anxiety and stop the cycle of fear and worry.

Values-Based Action: Living a Meaningful Life

ACT also emphasizes the importance of living a values-based life. Chronic illness can feel all-consuming, making it easy to lose sight of what truly matters. ACT encourages us to identify our core values and take actions that align with those values, even in the face of suffering. For me, this has meant prioritizing relationships, creativity, and personal growth, despite the limitations of my conditions.

The Importance of Compassion and Self-Care in Chronic Illness

Throughout my journey, one of the most important lessons I’ve learned is the importance of compassion, both for myself and others. Living with chronic illness can be incredibly isolating, especially when others don’t fully understand what you’re going through. It’s easy to feel frustrated, angry, or resentful when your body doesn’t cooperate, or when others don’t offer the support you need.

Compassion is a powerful antidote to these feelings.

By cultivating self-compassion, I’ve been able to treat myself with the same kindness and understanding that I would offer to a friend. This means acknowledging the difficulty of my situation, rather than minimizing or dismissing my struggles. It also means giving myself permission to rest, to set boundaries, and to prioritize my own well-being.

In addition to self-compassion, I’ve found that engaging in regular self-care is essential for managing chronic illness.

This includes not only physical care, such as managing symptoms and following medical advice, but also emotional and mental self-care. For me, this means engaging in activities that bring me joy, connecting with loved ones, and seeking out support when I need it.

Finding Hope and Resilience

Living with chronic illness is a lifelong journey, one that requires resilience, adaptability, and a deep well of inner strength. If you struggle with chronic illness and want a therapist who understands, schedule a free 15 minute virtual consultation to see how I can help.