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Speaking from the Other Side Of Chronic Illness
As someone who has journeyed through the darkness of systemic and discoid lupus and endometriosis, I feel uniquely positioned to shed light on what it means to live with a chronic illness. Many who haven't experienced such conditions may struggle to understand them, often harboring misconceptions that can further harm those already suffering. It's time to address these misunderstandings and educate ourselves on the reality of chronic illness.
Common Misconceptions About Understanding Chronic Illness
Chronic illness is frequently misunderstood by those who have never experienced it. Some people believe that individuals with chronic conditions, particularly those that cause fatigue or other debilitating symptoms, are lazy, unmotivated, or simply seeking attention. They may assume that those who suffer want someone to take care of them, that they're exaggerating their symptoms, or that they're using their illness as an excuse to avoid responsibilities. However, these assumptions couldn't be further from the truth.
The reality is that chronic illness isn't something anyone chooses. It's a relentless battle that takes a toll on the mind, body, and spirit. The body appears to turn against itself, unleashing unimaginable pain, neurological disturbances, anxiety, dizziness, digestive issues, insomnia, relentless fatigue, brain fog, muscle weakness, joint pain, skin rashes, hair loss, autoimmune flares, and a constant sense of physical and emotional exhaustion—the list is extensive, with each symptom adding another layer of suffering. These challenges are often compounded by the side effects of medications, which can introduce additional issues such as nausea, dizziness, weight gain, insomnia, and mood swings, further complicating the already difficult path to healing. It's not surprising that someone enduring such suffering would feel defeated, not only by their own body but by the lack of understanding from loved ones, the medical community, and society.
The Emotional Impact of Chronic Illness
One of the most profound impacts of chronic illness is the loss of desire to pursue the dreams and ambitions that once fueled a person's life. When every day becomes a struggle for survival, it's hard to muster the energy or enthusiasm to chase after goals that seem increasingly out of reach. This sense of defeat is compounded by the way society often treats those with chronic illnesses. Instead of offering support and understanding, many people withdraw because they don't know what to say or because they're tired of hearing about the ongoing struggles.
Abandonment is a common experience for those with chronic illnesses. Friends stop calling, family members avoid visiting, and invitations to social events become rare. This isolation only deepens the sense of despair. Those suffering from chronic illness don't want to be pitied or treated as burdens; they want to heal, to be free of the pain and suffering that has taken over their lives. They didn't bring this upon themselves, yet they often feel judged, gaslighted, and dismissed by those who should be their support system.
The Strain on Relationships
Chronic illness doesn't just affect the person diagnosed; it also puts a strain on relationships with family, friends, and even medical professionals. Loved ones may become frustrated and not understand why their once vibrant, active friend or family member has become so withdrawn and fatigued. They might not realize that even small activities can leave someone with a chronic illness bedridden for days. This lack of understanding can lead to hurtful comments, judgmental attitudes, and a growing distance between the person suffering and those around them.
Medical professionals, too, can sometimes contribute to the problem. When a doctor or nurse dismisses a patient's symptoms or attributes them to depression or anxiety without fully exploring the underlying causes, it can feel like yet another betrayal. Patients may question their sanity, wondering if they're exaggerating or imagining their symptoms. This kind of gaslighting can have devastating effects on a person's mental health, leading to increased anxiety, depression, and a sense of hopelessness.
The Role of Society
Society also plays a role in how those with chronic illnesses are treated. There's often a lack of awareness about the severity and complexity of these conditions. People might assume that if someone doesn't look sick, they must be okay or that a positive attitude is needed to overcome illness. This mindset can be incredibly damaging, as it places the blame for the illness on the person suffering rather than acknowledging the reality of their situation.
Chronic illnesses like lupus, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, rheumatoid arthritis, Lyme disease, and many others can affect anyone at any time. It's important to remember that no one is immune to the possibility of developing a life-altering illness. What would you want and need from those around you if you were in that position? How would you want to be treated?
What Those With Chronic Illness Need
What people with chronic illnesses need most is love, compassion, understanding, and genuine support. They need to know that they're not alone, are not being judged, and that their pain is recognized and validated. Here are some specific ways that caregivers, friends, and loved ones can help:
Listen Without Judgment: Sometimes, the best thing you can do is listen. Allow your loved one to express their feelings without offering solutions or dismissing their concerns. Just being there, offering a listening ear, can make a world of difference.
Educate Yourself: Take the time to learn about your loved one's chronic illness. Understanding the symptoms, challenges, and treatment options can help you provide better support and reduce the chances of making hurtful or uninformed comments.
Offer Practical Help: Instead of asking, "How can I help?" which can be overwhelming to someone already struggling, offer specific assistance. For example, you could say, "I'm going to the grocery store. What can I pick up for you?" or "I'd like to come over and help with laundry or cleaning this weekend."
Respect Their Limits: People with chronic illnesses must carefully manage their energy levels. Respect their boundaries and don't pressure them to participate in activities that might be too taxing. If they say no to an invitation, don't take it personally.
Stay in Touch: Keeping them in the loop is essential even if your loved one can't always join in on social activities. A simple phone call, text, or visit can help them feel connected and less isolated.
Encourage Them: Offer words of encouragement and remind them of their strength. Chronic illness can make a person feel powerless and defeated, so hearing positive affirmations from loved ones can be incredibly uplifting.
Avoid Pity: People with chronic illnesses don't want to be pitied. Pity can feel condescending and diminish their sense of agency. Instead, offer empathy and support, recognizing their struggle without reducing them to their illness.
Check Your Judgments: It's important to be aware of any negative judgments you might be harboring, even unconsciously. Ask yourself why you feel this way and work on shifting your perspective to one of compassion and understanding.
Be Patient: Healing, if possible, is a slow and unpredictable process. There will be good days and bad days. Your patience and unwavering support can make a significant difference in your loved one's ability to cope.
The Importance of Self-Reflection
It's essential to check in with yourself and understand why you might be behaving in a certain way towards someone with a chronic illness. Are you feeling frustrated because you don't understand their condition? Are you uncomfortable because you don't know what to say? Reflecting on your feelings can help you become a more compassionate and supportive presence in their life.
The Role of Research and Education
Research shows that chronic illnesses can have a profound impact on both the physical and mental well-being of those affected. Studies have demonstrated that chronic pain and fatigue can lead to depression, anxiety, and a host of other psychological issues. Understanding these connections can help caregivers and loved ones approach the situation with greater empathy.
For example, a study published in the Journal of Psychosomatic Research found that people with chronic fatigue syndrome (CFS) are more likely to experience depression and anxiety due to the persistent nature of their symptoms and the lack of effective treatment options. Similarly, research in the Annals of the Rheumatic Diseases highlighted the significant psychological burden faced by patients with lupus, including feelings of isolation, frustration, and helplessness.
What Society Can Do
Society as a whole needs to become more educated about chronic illness and its impact on those affected. Public awareness campaigns, educational programs, and media coverage can change perceptions and reduce stigma. It's also essential for employers, educators, and healthcare professionals to receive training on how to respectfully and accommodatingly support individuals with chronic illnesses.
One practical step society can take is to promote inclusivity in social and professional settings. This might include offering flexible work arrangements, creating accessible environments, and encouraging open conversations about chronic illness. By fostering a culture of understanding and acceptance, we can help those with chronic illnesses feel more supported and less isolated.
A Call to Action
If you're reading this and you don't have a chronic illness, I urge you to imagine what it would be like to live with one. Consider the daily challenges, the physical pain, the emotional toll, and the social isolation. Consider what you would want and need from those around you if you were in that position. Now, ask yourself how you can be that source of love, compassion, and understanding for someone else.
For caregivers, friends, or loved ones of someone with a chronic illness, know that your role is crucial. You can make a difference in their lives to help them feel seen, heard, and valued. Your support can provide hope in an otherwise dark and challenging journey.
Let's commit to being a more compassionate and educated society, one that doesn't shy away from the reality of chronic illness but instead embraces those who are suffering with open arms and open hearts. Together, we can create a world where everyone feels supported, understood, and loved, no matter their challenges.
This blog is a call to action for society to step up, educate themselves, and genuinely support those with chronic illnesses. By fostering a culture of understanding and compassion, we can help alleviate the suffering of millions and make the world a kinder, more inclusive place.
I understand the depth of these struggles, and I am here to help. This fall, I will launch a free caregiver support group, allowing caregivers to connect, share experiences, and discover ways to ease their loved ones' suffering. Please sign up for my newsletter to stay informed about the upcoming dates.
Want more inspiration and guidance on healing? Order my book Starving the Wolf: A Victory Over Lupus. It’s packed with personal insights and practical advice to help you reclaim your health and thrive. Follow me on Instagram @lupusphoenix for tips, encouragement, and updates on living well with lupus.
Karen Quiros, the founder of Balanced Wellness Consulting, has dedicated nearly four decades to pioneering holistic wellness to complement traditional medicine. Her journey, driven by personal battles with lupus and endometriosis, has shaped her into an experienced practitioner in health coaching, nutrition, positive psychology, and energy healing.
Karen's experiences are captured in her book Starving the Wolf: A Victory Over Lupus, where she shares her triumphs over illness. Her passion for holistic healing extends to leading retreats through her innovative Happiness Compass© program, which blends self-awareness and creativity to foster personal growth.
From New York, Karen embodies a balanced, holistic lifestyle, harmonizing the joys of family, nature, and lifelong learning. Her life is a testament to the resilience and empowerment of embracing holistic health. Stay connected with Karen and her journey on Instagram @lupusphoenix.
Disclaimer
The information in this blog is for educational and informational purposes only, based on my research and experiences. It may include both conventional and unconventional healing suggestions. Consult with a healthcare professional before making any changes to your treatment plan, as individual health circumstances vary. The author makes no representations or warranties regarding the accuracy, applicability, or completeness of the contents of this blog.
By accessing this information, you assume full responsibility for its use and agree that Karen Quiros and Balanced Wellness Consulting are not responsible or liable for any claim, loss, or damage arising from using the information provided. This blog is not a substitute for professional medical advice, diagnosis, or treatment. Use the information at your own risk and make informed decisions with your healthcare provider's guidance.
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