Lupus is an autoimmune disease that can cause pain, fatigue, and damage to any part of the body. Living with lupus presents many challenges, but there are ways to cope and live a fulfilling life.
What is lupus?
Lupus is an autoimmune disorder, meaning the body’s immune system attacks its own healthy cells and tissues. This leads to inflammation and damage throughout the body. The most common symptoms are:
- Fatigue
- Fever
- Joint pain or swelling
- Muscle pain
- Chest pain when breathing deeply
- Skin rashes, often on the face
- Photosensitivity (sensitivity to sunlight)
Lupus can be difficult to diagnose because its symptoms are similar to those of other conditions. There is no single test for lupus, but blood tests can help rule out other causes. With a proper diagnosis, the right treatments can help control symptoms.
Coping emotionally with a lupus diagnosis
Receiving a diagnosis of lupus is life-changing. At first, you may feel shocked, scared, sad, or even angry. These emotions are normal. Over time, you can move through the stages of grief and acceptance.
Here are some tips for coping emotionally with a lupus diagnosis:
- Let yourself feel whatever emotions come up. Don’t bottle up feelings.
- Join a lupus support group to share experiences with others facing similar challenges.
- Seek counseling or therapy if you are struggling with anxiety, depression, or other mental health effects.
- Express your feelings creatively through art, writing, or music.
- Learn relaxation techniques like meditation, yoga, or deep breathing exercises.
- Keep a journal to process emotions and track your physical and mental state.
- Stay connected with friends and family who support you.
It takes time to adjust to living with a chronic condition. Be patient with yourself and seek help when you need it. With time, you can shift your mindset to focus on coping well and finding meaning amidst the challenges.
Managing lupus fatigue
Exhaustion and weakness are among the most common and disruptive symptoms of lupus. Listen to your body and rest when needed. At the same time, balance rest with gentle activity to maintain strength and wellbeing. Other tips include:
- Plan your day around times when you have the most energy.
- Take short naps or breaks during the day.
- Prioritize important tasks and let other things go.
- Ask for help when your energy is low.
- Try yoga, tai chi, or other gentle exercises to reduce fatigue.
- Eat a healthy diet and stay hydrated to nourish your body.
- Reduce stress through relaxation techniques, counseling, or support groups.
- Discuss medication options for fatigue with your doctor.
Listen to your body day-to-day. When you have more energy, catch up on tasks. Rest when your body needs it. Finding this balance can greatly improve your quality of life.
Coping with joint pain and inflammation
Joint pain, stiffness, and swelling are common lupus symptoms. Medications can ease inflammation and relieve pain. Lifestyle measures also help:
- Apply warm or cold compresses to tender joints.
- Wrap joints for extra support.
- Exercise gently to maintain flexibility and range of motion.
- Try water exercise to reduce strain on joints.
- Use assistive devices like braces, splints, or a cane if needed for stability.
- Avoid activities that aggravate joint pain.
- Get restful sleep and take daytime breaks when hurting.
- Try massage, acupuncture, or TENS therapy to manage pain.
Let your doctor know if joint pain persists despite medication and lifestyle changes. There are many treatment options available to help get inflammation under control.
Protecting yourself from lupus flares
Many lupus patients experience flares, where symptoms suddenly worsen. Triggers may include:
- Stress
- Infection or illness
- Certain medications
- Sunlight exposure
- Hormonal changes
- Exhaustion
While flares can’t always be prevented, the following tips may reduce their frequency and severity:
- Get regular checkups to stay on top of any changes.
- Take medications as prescribed.
- Use sun protection, like clothes, hats, and sunscreen.
- Treat infections promptly.
- Balance activity with rest.
- Avoid known triggers when possible.
- Learn to pace yourself and not overdo it.
- Keep stress in check through relaxation, counseling, or other means.
Knowing your personal flare triggers helps you take precautions. It’s also key to have an action plan when a flare does strike.
Dealing with the uncertainty of lupus
The unpredictable nature of lupus can be stressful. Flares come and go without warning. Symptoms vary day-to-day. It’s hard feeling like you don’t have control. Strategies for coping with uncertainty include:
- Educating yourself about lupus so you know what to expect.
- Planning ahead for scenarios like a flare disrupting work or travel.
- Scheduling regular checkups to monitor for changes in disease activity.
- Tracking symptoms in a journal to identify patterns or early warning signs of flares.
- Building a network of social support you can lean on when needed.
- Letting go of the idea that life will be predictable and accepting lupus’s uncertainty.
- Focusing on the present moment rather than worrying about the future.
The unknowns of lupus can be managed with knowledge, preparation, and perspective. Focus on what you can control each day while accepting there will be ups and downs.
Maintaining relationships with lupus
The pain, fatigue, and mood changes of lupus can strain personal relationships. Communication and planning help maintain close bonds with partners, family, and friends:
- Explain how lupus affects you so loved ones understand your experiences.
- Be open when you’re struggling so people can support you.
- Make time for relationships despite lupus limitations.
- Pace yourself during social activities and take breaks when needed.
- Cope with mood swings or irritability through open communication, alone time, or professional help.
- Plan dates/visits for when your symptoms are milder.
- Let family and friends help with tasks when your energy is low.
It’s natural for those close to you to feel upset or worried about your illness. Support groups can help loved ones cope with these feelings. Your openness and patience combined with their understanding helps maintain loving relationships.
Finding support for living with lupus
Having sources of support can make coping with lupus much easier. Possible options include:
- Online or in-person lupus support groups – Connect with others facing similar challenges for advice and emotional support.
- Individual or family counseling – Work through complex feelings and relationship issues with a therapist.
- Rheumatologist – Have regular appointments with a lupus specialist to optimize your treatments.
- Primary care doctor – See your regular doctor for preventative care and overall wellness.
- Pain management clinic – Get specialized help controlling persistent pain.
- Physical or occupational therapist – Gain strategies for managing fatigue, weakness, and joint issues.
Don’t be afraid to ask for help. People in your support network want to help you live life to the fullest. There are many resources available if you reach out.
Pursuing what matters with lupus limitations
While lupus may prevent you from some activities, it doesn’t have to stop you from enjoying a meaningful life. Adaptation, planning, and focusing on priorities help you pursue what matters most to you.
Tips include:
- Let go of unrealistic expectations for what you “should” be able to do.
- Focus your limited energy on your most important values and activities.
- Ask for accommodations at work or school during lupus flares.
- Take up more feasible hobbies that fit your current abilities.
- Set a manageable pace for daily tasks and obligations.
- Plan meaningful activities during times of day when you have more energy.
- Adapt activities you enjoy to be gentler on your body, like switching to swimming if running is too hard on your joints.
Lupus may force you to make changes to how you live your life. But you can still find purpose and enjoyment if you stay flexible, get creative, and focus on what matters most to you.
Living a healthy lifestyle with lupus
A healthy lifestyle aims to limit lupus symptoms so you feel your best each day. Recommendations include:
- Balancing rest and activity – Get adequate sleep without overdoing it. Mix light activity with rest periods.
- Managing stress – Try meditation, therapy, journaling, or other relaxation techniques.
- Eating nutritious anti-inflammatory foods – Focus on fruits, vegetables, fish, whole grains, beans, nuts and healthy fats like olive oil.
- Avoiding sunlight – Use sunscreen and protective clothing outside.
- Not smoking – Smoking worsens lupus symptoms.
- Practicing self-care – Do things that nourish your mind, body and spirit.
Making daily choices to nourish your physical and mental health provides the foundation for coping with lupus. Work closely with your healthcare providers for personalized lifestyle recommendations.
When to seek emergency lupus treatment
Most of the time, you can manage lupus flare symptoms at home using self-care strategies and calling your doctor as needed. But in some cases, emergency care is crucial. Go to the emergency room or call 911 if you experience:
- Trouble breathing
- Chest pain
- Fainting spells
- Racing heart
- Sudden, severe pain anywhere in the body
- Signs of a heart attack or stroke
- A severe flare after recently changing lupus medications
- A possible blood clot, such as leg swelling and pain
- A high fever or infection not improving with home treatment
- Worsening symptoms of lupus-related kidney inflammation like swelling, leg pain, or foamy urine
Some emergencies like heart attacks require immediate treatment to prevent life-threatening complications. So it’s better to be safe and get checked out if very concerned. For less severe flares, call your rheumatologist’s office for guidance.
Living fully with lupus
Although challenging at times, living fully with lupus is absolutely possible. Staying hopeful through the ups and downs is key. With the right treatments, support system, lifestyle habits, and self-care techniques, you can manage your symptoms, cope with the emotions of chronic illness, and thrive.
