Living with Lupus can be a challenging journey, where individuals face the uncertainties and complexities of a chronic autoimmune disease. Lupus, also known as Systemic Lupus Erythematosus (SLE), affects millions of people worldwide, disrupting their physical health, emotional well-being, and daily lives. Despite its difficulties, many individuals with Lupus exhibit remarkable resilience, hope, and determination as they navigate the path of managing their condition.
This article explores the multifaceted reality of living with Lupus, shedding light on the physical symptoms, emotional struggles, and the impact it has on relationships and lifestyle. Throughout this journey, individuals with Lupus find the strength to adapt to their circumstances, seek effective treatments, and cultivate a support network to help them overcome the challenges they face. Drawing from personal experiences, shared stories, and expert insights, we delve into the strategies and coping mechanisms that empower those living with Lupus to embrace life with courage and optimism.
By understanding the realities of Lupus and the diverse ways individuals respond to it, we aim to foster empathy and awareness, promoting a supportive and compassionate environment for those navigating the complexities of this chronic illness. As we explore the resilience and hope that thrive within the Lupus community, we gain a deeper appreciation for the strength of the human spirit in the face of adversity. Together, let us embark on this journey of discovery, compassion, and empowerment as we navigate life’s challenges with Lupus.
Understanding Lupus: Defining the Condition and its Variability
Lupus is a chronic autoimmune disease, which means it is a condition where the body’s immune system mistakenly attacks its own healthy tissues and organs. In a healthy immune system, special cells and proteins work together to protect the body from harmful invaders like bacteria and viruses. However, in people with Lupus, this defence system becomes confused and starts attacking healthy cells and tissues, causing inflammation and damage.
Key facts about Lupus
Wide-ranging Symptoms: Lupus can affect various parts of the body, leading to a wide range of symptoms. Common symptoms include fatigue, joint pain, skin rashes (especially on the face), fever, and swelling.
Flare-ups and Remissions: Lupus is characterized by periods of flare-ups, where symptoms worsen, followed by periods of remission, where symptoms may improve or disappear. These flare-ups can be unpredictable and vary in intensity.
Diagnosis Challenges: Diagnosing Lupus can be challenging because its symptoms can mimic those of other conditions. Doctors use a combination of medical history, physical exams, blood tests, and other diagnostic tools to confirm the presence of Lupus.
Sarah Mcarthy, a project manager at MCB tells us about how she struggled to get a diagnosis “initially I received my diagnosis when I was around 20 years old, but my symptoms began to surface when I was about 13 or 14. Initially, I experienced extreme fatigue, sleep issues, and persistent stiffness, along with chronic pain. After consulting multiple doctors, I was diagnosed with fibromyalgia at the age of 16. Unfortunately, my health didn’t improve, leading to more doctor’s appointments. By the time I turned 18, I was diagnosed with undifferentiated connective tissues disorder. At that stage, my rheumatologist didn’t recommend many medications except for celebrex, which didn’t provide much relief. Eventually my blood work started showing concerning results, and at the age of 20, I was diagnosed with lupus and prescribed plaquenil which has helped things”.
Triggers and Causes: The exact cause of Lupus is not fully understood, but it is believed to be a combination of genetic and environmental factors. Certain triggers, such as stress, infections, and exposure to sunlight, can worsen symptoms in some individuals.
No Cure, but Manageable: Currently, there is no cure for Lupus, but medical treatments and lifestyle changes can help manage the symptoms and prevent complications. Medications, such as anti-inflammatory drugs and immune-suppressants, are often prescribed to control inflammation and reduce immune system activity.
Different types of Lupus and their symptoms
Lupus, a complex autoimmune disease, manifests in different forms, each with its unique symptoms and effects on the body. Explore the various types of lupus and their specific characteristics to gain a better understanding of this challenging condition.
Systemic Lupus Erythematosus (SLE)
SLE is the most common form of lupus and can affect multiple organs and systems in the body. Common symptoms include fatigue, joint pain and swelling, skin rashes (often triggered by sun exposure), fever, and hair loss. Other organs such as the kidneys, heart, lungs, and brain may also be affected in some cases.
This type of lupus primarily affects the skin and presents with various skin rashes and lesions. The most common form is discoid lupus erythematosus (DLE), characterized by red, raised, and scaly patches on the skin, particularly on the face, scalp, and ears.
Drug-Induced Lupus: Some medications, such as certain blood pressure and heart medications, can trigger lupus-like symptoms in some individuals. These symptoms usually subside once the medication is discontinued.
This rare type of lupus affects newborn babies of mothers with certain autoantibodies. It can cause skin rashes, liver problems, and, in some cases, congenital heart block in the baby.
Subacute Cutaneous Lupus
Characterized by skin rashes triggered by sun exposure. Does not affect internal organs but can cause significant discomfort.
Each type of lupus may manifest differently in individuals, and the severity of symptoms can vary. Early diagnosis and appropriate management are crucial in effectively controlling lupus and improving the quality of life for those living with the disease. If you experience any symptoms suggestive of lupus, it is important to seek medical evaluation and guidance for proper diagnosis and treatment.
Unpredictable nature of Lupus flares and remissions
Lupus is characterized by its unpredictable nature, involving periods of flare-ups and remissions, which can be challenging for those living with the condition. Flares are episodes of increased disease activity, leading to symptoms such as fatigue, joint pain, skin rashes, and organ inflammation. These flares’ severity and duration vary among individuals and can be triggered by factors like stress, infections, or certain medications. Remissions, on the other hand, offer temporary relief from symptoms but do not imply a cure, as the disease may become active again. Coping with the uncertainty of lupus requires constant symptom monitoring and adjustments in treatment plans, while emotional and social support play a crucial role in managing the condition’s ups and downs effectively.
Samantha is a senior warehouse manager at Hidden Pearls, UK based disability friendly company that specialises in chiffon hijabs. She spoke to us about her daily struggles with Lupus, saying, “It can be incredibly challenging. One moment, I’m active and getting things done, but a few weeks later, I might be bedridden for weeks, grappling with severe joint pain and nausea. Fatigue is ever-present, and it affects my sleep, making me feel guilty for wanting to rest all the time. Sleep becomes an escape after taking a mix of painkillers, offering a brief respite from the pain. I experienced a period of remission for several years, but the last four years have been more difficult, especially after contracting sepsis during my pregnancy, which led to hospitalization for a month. My CPR results spiked, and I’ve been in constant pain since. Steroids provide some relief by reducing inflammation, but they’re not suitable for long-term use. I’m always on the lookout for new research papers, hoping to find a solution. I am lucky that my place of work is very accommodating but it’s not easy to find an employer like this especially during current economic turmoil”.
The Emotional Impact of Lupus
Living with a chronic illness like Lupus can present a myriad of emotional challenges that extend beyond the physical symptoms. These challenges can vary from person to person, but some common emotional experiences include:
Anxiety and Uncertainty
The unpredictable nature of Lupus flares and remissions can lead to anxiety and uncertainty about the future. Patients may worry about when the next flare will occur and how it will impact their daily life and well-being.
The Lympho Sign Journal website explores the psychological effects of Lupus in their study and finds that “Complaints of stress, anxiety, nervousness and lack of enjoyment of life were common in those who were diagnosed with SLE… SLE causes psychological problems associated with depression and anxiety, causing psychological behaviour patterns (Moses et al. 2005; Mendelson 2006; Monaghan et al. 2007; Budhram et al. 2014). Anecdotal reports suggest that SLE is associated with high vulnerability and patients can experience emotional and psychological issues, especially during the treatment process (Iverson 1995; Druley et al. 1997; Santoantonio et al. 2006; Schattner et al. 2008; Andrews et al. 2009; Shucard et al. 2011- taken directly from webiste)”
Dealing with a chronic illness can be emotionally draining, and many individuals with Lupus may experience feelings of sadness, hopelessness, or loss of interest in activities they once enjoyed.
Frustration and Anger
Coping with the limitations imposed by Lupus, such as fatigue or pain, can lead to feelings of frustration and anger. Patients may become frustrated with their body’s limitations and the challenges they face in managing their condition.
Isolation and Loneliness
Living with a chronic illness can sometimes lead to feelings of isolation and loneliness, as individuals may struggle to engage in social activities or face difficulties in maintaining relationships due to their health limitations.
Addressing Feelings from Lupus:
Coping with the emotional challenges of living with Lupus is crucial for maintaining overall well-being and quality of life. Addressing feelings of frustration, anxiety, and uncertainty can involve:
- Seeking Professional Support: Engaging with mental health professionals, such as counsellors or therapists, can provide valuable support in navigating the emotional challenges of chronic illness.
- Connecting with Support Groups: Joining support groups for individuals with Lupus can offer a sense of community and understanding, allowing individuals to share experiences and coping strategies.
- Practicing Self-Care: Taking time for self-care activities, such as relaxation techniques, mindfulness, or hobbies, can help reduce stress and promote emotional well-being.
- Communication: Openly communicating with family, friends, and healthcare providers about emotional struggles can lead to better support and understanding.
- Setting Realistic Goals: Establishing realistic goals and priorities can help individuals manage their energy and avoid feeling overwhelmed by trying to do too much.
Importance of Mental Health Support and Coping Strategies
The emotional impact of living with Lupus should not be underestimated. Mental health support and coping strategies play a crucial role in helping individuals navigate the challenges they face.
A qualitative study conducted with 13 adults participating in focus groups and published in Lupus Science and Medicine revealed some factors that can be modified to help deal with lupus. These factors include having a strong support system, open communication about systemic lupus erythematosus (SLE), and maintaining a positive patient-provider relationship. Additionally, the study identified certain strategies that can be beneficial, such as focusing on the positive aspects of living with lupus, reducing stress levels, and using technology to cope with the challenges of the disease.
Essentials to Consider
Recognize and Validate Emotions: Acknowledge and validate the range of emotions experienced, allowing individuals to process their feelings and seek appropriate support.
Seek Professional Help: If feelings of anxiety, depression, or distress become overwhelming, seeking professional mental health support is essential. Therapists or counsellors can provide guidance and coping tools.
Engage in Stress-Relief Activities: Incorporating stress-relief activities like meditation, yoga, or spending time in nature can help manage emotional challenges.
Lean on Support Systems: Relying on the support of loved ones who understand and empathize with the challenges of living with Lupus can be invaluable for emotional well-being.
Be Kind to Yourself: It’s essential for individuals with Lupus to practice self-compassion and be patient with themselves during difficult times.
Remember that seeking mental health support is a sign of strength, and addressing emotional challenges is a vital aspect of overall well-being while living with Lupus.
Managing Symptoms and Treatment Options:
Living with Lupus often involves managing a range of physical symptoms, including chronic pain, fatigue, joint stiffness, and skin rashes. Coping strategies for these symptoms can include:
- Pain Management Techniques: Exploring pain relief methods such as hot or cold packs, gentle exercises, or relaxation techniques can help alleviate discomfort.
- Rest and Pacing: Balancing activity and rest is essential to manage fatigue. Learning to pace activities and listen to one’s body can prevent overexertion.
- Physical Therapy: Engaging in physical therapy can improve joint mobility and muscle strength, reducing pain and increasing overall function.
- Skin Protection: For individuals with Lupus-related skin rashes, protecting the skin from sunlight and using gentle skincare products can be beneficial.
Importance of Medication and Treatment
Adherence to prescribed medications and treatment plans is crucial for effectively managing Lupus and preventing disease flares. Key aspects to consider include:
Following Medical Recommendations: Sticking to medication schedules and treatment plans as prescribed by healthcare professionals is vital for disease control.
Communicating with Healthcare Providers: Openly communicating with doctors about treatment effects, side effects, and concerns can lead to adjustments that better suit individual needs.
Educating Yourself: Understanding the purpose and benefits of prescribed medications can motivate adherence and enhance treatment outcomes.
Complementary Therapies & Lifestyle Adjustments
In addition to conventional medical treatments, complementary therapies and lifestyle adjustments can play a supportive role in managing Lupus symptoms.
The National Library of Medicine found in the National Health Interview Survery (NHIS) that over half of patients diagnosed with systemic lupus erythematosus (SLE) have turned to complementary and alternative medicine (CAM) as a way to manage their symptoms and overall health. The use of CAM among SLE patients is believed to be as common as in the general population. Studies conducted in various countries show that approximately 50% of SLE patients in Britain, Canada, and the US, and 66.5% in China have tried CAM treatments to address their disease symptoms and promote better health. In Mexico, 53.6% of SLE patients reported using CAM at some point in their lives.
Among CAM users, 81% relied on dietary or herbal supplements, while 13% used mind-body practices. Interestingly, a survey in Canada revealed that 53% of SLE patients used vitamin and mineral supplements, including calcium and vitamin D, which are commonly used by the general population. However, it’s important to note that using supplements did not appear to affect disease activity, but SLE patients who used supplements showed higher levels of cumulative organ damage.
Techniques such as acupuncture, massage therapy, and mind-body practices like yoga or meditation may help reduce stress and improve overall well-being.
Adopting a balanced and nutritious diet may contribute to symptom management. Some individuals find that specific dietary adjustments, such as reducing inflammation-promoting foods, can be beneficial.
Engaging in gentle exercises, tailored to individual abilities, can help maintain joint flexibility, improve mood, and alleviate fatigue.
Managing stress is essential for individuals with Lupus, as stress can trigger or worsen flares. Relaxation techniques, hobbies, and mindfulness practices can aid in stress reduction.
Identifying and avoiding triggers that exacerbate symptoms, such as excessive sun exposure or certain foods, can contribute to better symptom management.
In managing symptoms and treatment options, it is crucial to work closely with healthcare providers to develop a comprehensive and personalized approach to self-care. Embracing a combination of conventional medicine, complementary therapies, and lifestyle adjustments can empower individuals with Lupus to find balance and improve their quality of life. Always consult with healthcare professionals before making any changes to treatment plans or lifestyle practices.
Empowering Yourself – Taking Control
- Educate Yourself: Take the initiative to learn about Lupus, its symptoms, and available treatment options. Understanding your condition empowers you to make informed decisions about your care.
- Communicate Effectively: Be open and honest with your healthcare providers about your symptoms, concerns, and treatment preferences. Effective communication ensures that your needs are heard and addressed.
- Ask Questions: Don’t hesitate to ask questions about your treatment plan, potential side effects of medications, or any other aspect of your care that you’re unsure about. Knowledge is empowering.
- Keep Records: Maintain a health journal to track symptoms, medication effectiveness, and any changes in your condition. This information can help you and your healthcare team make informed decisions about your care.
Realistic Goals & Pacing Yourself
- Prioritize Tasks: Break down your daily tasks into manageable steps and focus on what’s most important. Pace yourself by taking breaks and avoiding overexertion.
- Embrace Flexibility: Recognize that living with Lupus may require adjustments to your plans and goals. Be flexible and adapt to changing circumstances without feeling discouraged.
- Listen to Your Body: Pay attention to your body’s signals and limitations. Rest when you need to and avoid pushing yourself beyond your physical or emotional capacity.
- Seek Support: Share your goals and challenges with friends, family, or support groups. Having a support system can provide encouragement and understanding as you navigate your Lupus journey.
Celebrating Personal Achievements
Acknowledge Progress: Celebrate even the smallest achievements and improvements in your health. Whether it’s completing a task, managing a symptom, or sticking to your treatment plan, each step forward matters.
Be kind to yourself, especially during challenging times. Lupus may present obstacles, but remember that you are doing your best and that’s commendable.
Focus on Positivity:
Cultivate a positive mindset and focus on what you can do rather than what you can’t. Optimism and resilience can help you cope with the ups and downs of living with a chronic illness.
Engage in Self-Care:
Prioritize self-care activities that bring you joy and relaxation. Whether it’s spending time in nature, practicing hobbies, or engaging in mindfulness exercises, self-care is essential for well-being.
Set milestones and celebrate when you achieve them. Recognize your progress and use these celebrations as motivation to keep moving forward.
Empowering yourself in your Lupus journey involves taking an active role in your care, setting realistic goals, and acknowledging your achievements along the way. By advocating for yourself, pacing your activities, and fostering a positive outlook, you can navigate the challenges of Lupus with resilience, hope, and a sense of empowerment. Remember that each person’s journey with Lupus is unique, so find what works best for you and build a support network to help you along the way.
In the face of the challenges that Lupus presents, it is essential to remember that you are not alone. Living with Lupus requires courage, strength, and resilience, and each person’s journey is unique. By understanding the condition, seeking support, and embracing self-care, individuals living with Lupus can navigate their path with determination and hope. Remember, there is strength in the Lupus community, and together, we can find empowerment and inspiration in our shared experiences. As we continue to learn, grow, and support one another, may this article serve as a beacon of hope and encouragement for all those on their Lupus journey.