Each month I present a topic relating to life with psoriatic arthritis and lead a discussion in WebMD’s Psoriatic Arthritis Community on Facebook. This month’s presentation was about the grief cycle and how it applies to life with psoriatic arthritis. Watch or read the presentation, listen to my discussion answers, then keep the conversation going by sharing your answers in the comments.
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The Grief Cycle and Psoriatic Arthritis
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Navigating the Emotional Rollercoaster: The Grief Cycle and Psoriatic Arthritis Transcript
Thank you for being here today as we delve into a topic that touches the depths of human emotions and resilience. For those of you who don’t know me, I am Cynthia Covert, owner of The Disabled Diva Blog and a fellow psoriatic arthritis patient. I was diagnosed with psoriasis in 2001, and despite having all the symptoms, I wasn’t diagnosed with psoriatic arthritis until two years later.
Today, we will explore the emotional rollercoaster experienced by individuals diagnosed with psoriatic arthritis. This chronic autoimmune disease not only affects the joints but also leaves its mark on the skin, presenting unique challenges for those who face it.
Imagine for a moment receiving news that alters the course of your life. The diagnosis of psoriatic arthritis can be a seismic event, sending shockwaves through one’s world. It is not merely a medical label; it represents a profound shift in one’s physical and emotional well-being. The impact of receiving such a diagnosis cannot be underestimated. For many, it is a life-altering moment that ushers in a torrent of emotions, questions, and uncertainties.
The journey that unfolds can be likened to a rollercoaster ride through the depths of grief and, ultimately, to a place of acceptance and resilience. Individuals may experience a range of emotions in the moments following a diagnosis. Shock and denial may engulf their minds as they grapple with the realization that their bodies are now engaged in a relentless battle. Fear of the unknown and uncertainty about the future often creep in, casting long shadows on their once-stable lives.
The emotional challenges of psoriatic arthritis extend beyond the physical symptoms. It can be a silent thief, robbing individuals of their confidence, self-image, and sense of control. The pain, inflammation, and limitations imposed by the disease can create a profound sense of frustration, sadness, and loss.
Today, we embark on a journey to understand the emotional rollercoaster experienced by those living with psoriatic arthritis. We will explore the grief cycle, initially proposed by psychiatrist Elisabeth Kübler-Ross and its relevance in navigating the complex terrain of this condition. By shedding light on this topic, we hope to foster empathy, understanding, and support for individuals facing the challenges of psoriatic arthritis. So, let us venture forth into this exploration of emotions, resilience, and the path toward acceptance. Together, we will gain insights and tools to navigate the grief cycle in the context of psoriatic arthritis, ultimately empowering ourselves and those around us to overcome the challenges it presents.
Concept of Grief
The concept of the grief cycle, initially proposed by psychiatrist Elisabeth Kübler-Ross, provides us with a framework to understand and navigate the emotional journey experienced when facing significant life changes or loss. While originally formulated to describe the stages of grief in the context of terminal illness and death, these stages can also be applicable to other situations that evoke grief, such as receiving a diagnosis of psoriatic arthritis.
Five Stages of Grief
The five stages of grief are identified by Kübler-Ross, as denial, anger, bargaining, depression, and acceptance. It’s important to note that these stages are not rigidly sequential or linear. Each individual may experience these stages in a different order, or they may revisit certain stages multiple times before reaching acceptance.
Denial
Denial is often the first stage in the grief cycle. When faced with a life-altering diagnosis like psoriatic arthritis, it is common to initially deny or resist the situation’s reality. Denial acts as a protective mechanism, allowing us to process the overwhelming emotions that we’re feeling and to gradually come to terms with our new circumstances. As denial subsides, anger may emerge. We may feel a deep sense of frustration, resentment, or even rage in response to the disruption and limitations imposed by the disease.
Anger
Anger can be directed towards oneself, healthcare providers, or even loved ones as we grapple with the unfairness and challenges that psoriatic arthritis presents in our lives.
Bargaining
Bargaining often follows anger as we seek ways to regain control or negotiate with our circumstances. We may find ourselves making deals with a higher power, seeking alternative treatments, or trying to negotiate the terms of our condition. Bargaining can serve as a way to regain a sense of agency and hope in the face of the unknown.
Depression
Depression is a natural response to significant loss or to a life-altering condition. As we come to terms with the reality of psoriatic arthritis and its impact on our lives, we may experience deep sadness, grief, and a sense of hopelessness. Depression can be a challenging stage, as it may manifest as a loss of interest in previously enjoyed activities and a struggle to find joy and purpose in life.
Acceptance
Ultimately, the grief cycle leads individuals toward acceptance. Acceptance does not mean resignation or giving up but rather recognizing and acknowledging our new reality. It involves finding ways to adapt, manage symptoms, and create a fulfilling life within the constraints of psoriatic arthritis. Acceptance is not a fixed endpoint but an ongoing process that allows us to move forward with resilience and strength.
Grief is a Unique and Personal Experience
It’s crucial to remember that the grief cycle is a unique and personal experience for each person. People may progress through the stages at different paces or even experience them simultaneously. Additionally, it’s common to revisit earlier stages or experience fluctuations in emotions as they navigate the challenges of living with psoriatic arthritis. By understanding the grief cycle and its stages, we can find our own path to acceptance and resilience.
Challenges
Chronic pain is one of the hallmark features of psoriatic arthritis. The persistent discomfort, stiffness, and inflammation in the joints can be debilitating and exhausting. The experience of enduring ongoing pain can lead to feelings of frustration and helplessness. It may disrupt daily activities, limit mobility, and impede the ability to engage in once-enjoyed hobbies or work.
Physical Challenges
The physical limitations imposed by psoriatic arthritis can further exacerbate the emotional toll. We may find ourselves facing new restrictions with our abilities, such as difficulty with mobility, reduced dexterity, or limitations in fine motor skills. These limitations can impact our sense of independence and self-confidence, leading to feelings of sadness and loss. In addition to the physical challenges, the potential need for lifestyle adjustments can add another layer of emotional impact.
Lifestyle Challenges
Psoriatic arthritis may necessitate modifications in daily routines, work schedules, and social activities. Adapting to these changes can be emotionally challenging, as we find ourselves grappling with the need to renegotiate our roles and expectations.
Relationships and Psoriatic Arthritis
The impact of psoriatic arthritis is not limited to us alone; it also affects our relationships and social interactions. Family members and loved ones may struggle to understand the physical and emotional burden faced by us. This can lead to feelings of isolation, and we might find it challenging to communicate their needs and emotions effectively.
Anxiety
Moreover, the unpredictability of psoriatic arthritis can generate heightened anxiety and stress. Fluctuations in symptoms, the potential for disease progression, and uncertainty about future health outcomes can all contribute to emotional distress. You may experience fear and worry about your ability to manage the disease effectively and maintain your quality of life.
Addressing the emotional impact of psoriatic arthritis involves having a supportive environment that acknowledges and validates these feelings It is essential to have a space where open communication is encouraged, allowing ourselves to express our frustrations, sadness, and sense of loss. Empathy, understanding, and active listening are what are needed from our supportive network for emotional well-being.
Coping Tools
Coping with the emotional challenges of psoriatic arthritis requires a multi-faceted approach that encompasses both practical strategies and a supportive mindset. Here are some coping strategies that can help you navigate the emotional rollercoaster associated with psoriatic arthritis.
Build a Support Network
Surround yourself with a supportive network of family, friends, and healthcare professionals who can make a significant difference. Share your feelings, concerns, and experiences with trusted individuals who can offer understanding, empathy, and practical support. Connecting with others who have similar experiences through support groups or online communities can also provide a sense of validation and camaraderie.
Seek Professional Help
Consider seeking professional help, such as therapy or counseling. A mental health professional can provide a safe space for you to explore and process your emotions, develop coping strategies, and manage the psychological impact of psoriatic arthritis. Therapy can help you navigate challenges, enhance resilience, and improve your overall well-being.
Connect with Patient Communities
Engage with patient communities or advocacy organizations dedicated to psoriatic arthritis. These communities can offer valuable resources, educational materials, and opportunities to connect with others who share similar experiences. Participating in events, workshops, or online forums can foster a sense of belonging, reduce feelings of isolation, and provide a platform for sharing and learning from others.
Practice Self-Care
Prioritize self-care activities that promote physical, mental, and emotional well-being. This can include engaging in regular exercise or physical therapy tailored to your abilities, practicing relaxation techniques such as deep breathing or meditation, and engaging in activities that bring you joy and fulfillment. Taking time for yourself, nurturing your interests, and engaging in hobbies can help reduce stress and cultivate a positive mindset.
Manage Stress
Explore stress management techniques that work for you. This may involve techniques like mindfulness, yoga, prayer, or journaling. Identify stress triggers and develop healthy coping mechanisms to reduce their impact. Additionally, maintaining a healthy lifestyle through proper nutrition, adequate sleep, and regular physical activity can help manage stress levels.
Focus on Positivity
Cultivate a positive mindset and practice gratitude. While living with psoriatic arthritis can present challenges, actively seek out the positive aspects of your life, as it can help shift your perspective and improve your overall well-being. Surround yourself with positive influences, engage in activities that bring you joy, and practice self-compassion. Celebrate small victories, and acknowledge your strength and resilience in managing emotional challenges.
Educate Yourself
Knowledge is power. Take the time to learn about psoriatic arthritis, its treatment options, and self-management strategies. Understanding the condition can empower you to make informed decisions, communicate effectively with healthcare providers, and to help you take an active role in your own care.
Remember that coping strategies are personal, and what works for one person might not work for another. Exploring different approaches and adapting them to suit your unique needs and preferences is essential.
Be patient with yourself and allow for ups and downs in your emotional journey. With time, resilience, and the right support, you can navigate the emotional challenges of psoriatic arthritis and live a fulfilling life.
Now it’s your turn.
Where are you in the grief cycle?
Is there an area that you are struggling with?
What advice do you have for others?
Discussion Questions and My Responses Transcript
Hi, I’m Cynthia, and I welcome you to The Disabled Diva Blog. My life has been a rollercoaster of health battles. I’ve been living with chronic pain caused by fibromyalgia, psoriatic arthritis, psoriasis, and abdominal and endometriosis, for over 20 years.
Through my blog, I’ve made it my mission to empower fellow chronic illness patients and hopefully be a beacon of hope and understanding. I believe that together, we can face any challenge life throws our way.
My experiences have taught me the importance of empathy and education. That’s why I strive to provide valuable resources and insights to patients and their loved ones so they don’t have to face their journey alone.
I foster support and camaraderie as a community leader for two Facebook support groups. I also am active on various social media platforms. Links are provided in the description of this video.
Thank you for joining me on this incredible adventure. Now onto today’s video.
The following questions and answers are in response to my presentation, “Navigating the Emotional Rollercoaster: The Grief Cycle and Psoriatic Arthritis.” After listening to my responses, feel free to share your thoughts in the comments. Need more time to process what you have learned about the grief cycle and its relation to life with psoriatic arthritis? No problem. My downloadable workbook can help you! Download your copy today!
Diagnosis
Reflect on your initial emotional response when receiving a psoriatic arthritis diagnosis. How did you cope with the feelings of shock, denial, or fear, and how have those emotions evolved over time?
When I received my psoriatic arthritis diagnosis, my initial emotional response was one of shock. I had never heard of psoriatic arthritis before, and the news came as a complete surprise. After leaving the doctor’s office, fear began to creep in as I turned to the internet to learn more about the condition. Reading about the struggles and pain that other patients faced with psoriatic arthritis filled me with anxiety and worry about what the future might hold for me.
Despite having read numerous patient stories about psoriatic arthritis, I found myself living in denial. Part of me clung to the hope that my life wouldn’t have to change significantly and that the diagnosis might somehow be a mistake. It was challenging to accept the reality of the condition and the potential impact it could have on my life.
As time passed, my emotions evolved. Gradually, I started to face the reality of living with psoriatic arthritis and acknowledged the challenges it presented. With the support of loved ones and healthcare professionals, I began to explore various coping strategies to manage the emotional aspects of psoriatic arthritis.
Although fear still arises from time to time, I have learned to navigate it more effectively. Becoming more informed about the condition and self-care practices has empowered me to better manage the emotional toll of psoriatic arthritis.
The journey has been a mix of ups and downs, and I’ve come to realize that it’s okay to experience a range of emotions. Embracing this truth has allowed me to be more compassionate with myself throughout the process. Connecting with patient communities has also been a source of support, and sharing experiences with others who understand what I’m going through has been incredibly valuable in fostering acceptance and emotional healing. While there are still challenging days, I am finding my way toward acceptance and discovering the strength to adapt and thrive despite psoriatic arthritis.
Through sharing my experiences, I hope to provide support and inspiration to others facing similar emotions on their own journey with psoriatic arthritis. Together, we can find the strength to face the challenges and embrace life with resilience and hope.
Challenging Stage
In the context of psoriatic arthritis, which stage of the grief cycle (denial, anger, bargaining, depression, or acceptance) do you find most challenging to navigate? How have you worked towards reaching acceptance or managing these emotions effectively?
Depression is the stage of the grief cycle that I find most challenging to navigate in the context of psoriatic arthritis. It often takes me a while to recognize that I am experiencing depression, even though I have been living with PsA for over twenty years. Depression can be sneaky, and its onset may not be immediately apparent to me.
However, over time, I have learned to look for clues and signs of depression. Journaling has been a helpful tool in this regard, as it allows me to reflect on my emotions and thoughts. By consistently journaling, I can identify when I am entering a dark phase and take proactive steps to manage my emotions effectively.
Accepting my psoriatic arthritis diagnosis happened many years ago, but it wasn’t until recently that I fully accepted the unpredictability of this autoimmune disease. Coming to terms with the uncertainty that PsA brings has been an ongoing process. I have learned to adapt and embrace a flexible mindset, which helps me cope with the ever-changing nature of the condition.
Despite these strides, I still struggle to accept the days lost to fatigue. Fatigue can be a particularly challenging aspect of psoriatic arthritis, impacting my ability to engage in daily activities and causing frustration. However, I am continuously working on self-compassion during these times, reminding myself that it’s okay to rest and prioritize my well-being.
Navigating the emotional challenges of depression and acceptance remains a journey for me, but I am committed to growth and resilience. Seeking support from loved ones and participating in patient communities has been essential in this process. By connecting with others who share similar experiences, I find comfort and understanding, helping me to feel less alone on this journey with psoriatic arthritis.
While there are days when it’s tough to manage emotions effectively, I remain hopeful and determined to find balance and contentment despite the challenges of living with psoriatic arthritis. Each step forward, no matter how small, is a victory, and I’m grateful for the lessons and insights gained on this path of acceptance and emotional healing.
Impact of Psoriatic Arthritis on Life
How has psoriatic arthritis impacted your daily life, relationships, and self-image? Describe the emotional toll of chronic pain and physical limitations, and share any strategies you have implemented to address these challenges.
Psoriatic arthritis has had a profound impact on various aspects of my daily life, relationships, and self-image. The pain and inflammation in my hands, feet, knees, hips, and spine have made simple tasks like housecleaning and yardwork nearly impossible. The physical limitations caused by the condition were a significant challenge, and I found myself unable to perform many tasks that were once routine.
In my relationships, particularly with my husband and children, psoriatic arthritis brought about strain as the responsibilities of tasks I could no longer handle fell upon them. Initially, there was some resentment as they struggled to understand the extent of my limitations. However, with time, this resentment transformed into compassion and understanding. They now realize that my reluctance to do certain things is not a matter of unwillingness but rather a result of physical limitations.
While my loved ones struggled to adapt emotionally, I also grappled with feelings of being a burden and frustration over how my body seemed to fail me. This internal struggle took a toll on my self-image, as I felt a sense of inadequacy due to my physical limitations.
Throughout this journey, I have learned valuable lessons. Honesty and open communication with my family have been crucial in fostering understanding and support. Sharing my experiences and feelings has helped them comprehend the challenges I face, and in turn, they have become more compassionate and willing to assist when needed.
Taking care of myself and prioritizing self-care has also been essential in managing the emotional toll of chronic pain and physical limitations. Embracing self-compassion and allowing myself to rest when needed has become a vital aspect of my coping strategy.
Despite the challenges, I have come to realize that accepting help and support from my loved ones is not a sign of weakness but rather an acknowledgment of the strength that comes from acknowledging our vulnerabilities. Being honest about my limitations has brought our family closer and fostered a sense of unity and understanding.
For others facing similar challenges, my advice would be to communicate openly with your family about your experiences and needs. Allow them to be part of your journey and educate them about psoriatic arthritis and its impact on your daily life. Remember to take care of yourself and be gentle with yourself during difficult times. Embracing self-compassion and leaning on your support network can make a significant difference in navigating the emotional toll of psoriatic arthritis and living a fulfilling life despite the challenges.
Support Network
Building a support network is crucial in managing emotional challenges. How have you sought support from family, friends, healthcare professionals, or patient communities? How has this support influenced your emotional well-being and ability to cope with psoriatic arthritis?
For me, building a support network to manage the emotional challenges of living with psoriatic arthritis has been a journey of learning and growth. Initially, I struggled with accepting my need for help and faced a fear of being rejected when asking for support. However, I reminded myself that not every rejection stems from an unwillingness to help but rather from their own limitations at that time.
Overcoming these obstacles was crucial in seeking support from family, friends, and patient communities. Having a larger support network has been invaluable in preventing burnout from relying solely on a few individuals. While I strive to do as much as I can on my own, I have learned to lean on my family’s support to help keep the household running smoothly, especially during times when my physical limitations make tasks challenging.
Patient communities have been a true blessing in my life. The people I have connected with, who understand what I am going through, have been nothing short of amazing. Being part of these communities is a powerful reminder that I am not alone in my journey. Sharing our struggles and triumphs with each other brings a sense of camaraderie and provides an opportunity for mutual learning and growth.
On the other hand, my experiences with the medical community have not been as positive. I have faced more medical negligence and gaslighting in the past 30 years than any person should endure in a lifetime. Despite these challenges, the unwavering support from my husband and children is what makes living with psoriatic arthritis, fibromyalgia, psoriasis, and the adhesions from endometriosis and multiple abdominal surgeries possible.
Their understanding, empathy, and willingness to stand by my side through the ups and downs have been a constant source of strength and comfort. Knowing that I have their love and support makes facing the challenges of chronic conditions more manageable.
In conclusion, building a support network has been a transformative process that has taught me the importance of reaching out for help and connecting with those who understand my journey. It has positively influenced my emotional well-being and ability to cope with the complexities of psoriatic arthritis and other conditions. The support from my loved ones is the foundation that allows me to navigate life’s challenges with resilience, and I am forever grateful for their unwavering presence in my life.
Emotional Healing
Self-care and stress management play a significant role in emotional healing. What self-care activities have you incorporated into your routine to improve your overall well-being? How do these practices help you manage stress and cultivate a positive mindset on your journey with psoriatic arthritis?
In terms of self-care and stress management, I have incorporated various activities into my daily routine to improve my overall well-being while navigating life with psoriatic arthritis.
One of the essential self-care practices for me is focusing on my spiritual health through prayer and meditation. Taking time for these practices helps center my mind and brings a sense of peace and calmness amidst the challenges of chronic pain and inflammation. I also consider my acceptance of help in the form of an antidepressant when I found myself feeling helpless and worthless as a form of self-care.
Addressing pain promptly is another crucial aspect of my self-care routine. I have learned to pay close attention to the onset of pain and take action sooner rather than later. By doing so, I can prevent constant pains related to psoriatic arthritis from escalating to an unbearable level. This includes pacing myself, recognizing my physical limits, and incorporating ample rest into my routine, regardless of how much I may want to deny my limitations.
Changing my perspective on rest days has been transformative for me. Instead of getting frustrated or angry at the need for bed rest, I now view these days as necessary for my body’s recovery, similar to how one would recover from a car accident or a recoverable injury. Acceptance has led to a more positive mindset. To make these days more enjoyable, I have created a streaming queue filled with shows and movies to look forward to, making the resting periods a more pleasant experience.
Setting boundaries that align with my chronic life has been crucial in managing stress and finding balance. Accepting that my life may not look the way it used to has allowed me to carve out a lifestyle that works best for me and my family. This means adjusting activities, schedules, and commitments to accommodate my physical needs and limitations.
Embracing these self-care activities and stress management techniques has significantly contributed to my emotional healing on this journey with psoriatic arthritis. They have helped me cultivate a more positive mindset and provided me with the tools to face challenges with greater resilience and determination. By nurturing my physical, mental, and spiritual well-being, I am better equipped to navigate the complexities of living with psoriatic arthritis and to find joy and fulfillment in each day, no matter the challenges that arise.
Conclusion
Now it is your turn! I understand that these questions are of a personal nature and could bring up a lot of unresolved issues. I invite you to share your responses in the comments if you feel comfortable doing so.
Need help working through the grief process. Download my Navigating the Emotional Rollercoaster: The Grief Cycle and Psoriatic Arthritis Workbook today. Use it on your own or include it in your therapy appointments.
Remember that the grief cycle is never ending when living with a chronic illness. There will always be a new limitation, pain, symptom, or problem that will alter your life as you know it.
Until next time, this is Cynthia, The Disabled Diva, reminding you that you are not alone!
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Keywords and Synonyms
Psoriatic arthritis, Emotional challenges, Coping strategies, Grief cycle, Resilience, Support network, Self-care, Stress management, Acceptance, Chronic pain, Physical limitations, Patient communities, Emotional toll, Positive mindset, Well-being, Lifestyle adjustments, Emotional healing, Health Journey, Self-compassion, Emotional well-being, Workbook.