Navigating Loss and Grief with Lupus

A lupus journey can be filled with uncertainty, grief, and loss, but there are ways to build resilience and navigate these difficult circumstances.

I’ll never forget the day my best friend Srijana told me she had lupus.  

I didn’t know very much about the autoimmune disease at the time – I had never known anyone with lupus, and it just didn’t seem to fit my vibrant, beautiful young friend. I knew she had not been feeling well for a while, battling fatigue, mysterious rashes, and other symptoms that just didn’t quite add up. But this felt heavy, and I needed to understand what it meant. 

I came to understand that lupus symptoms can be managed with a combination of the right medications and lifestyle modifications, and Srijana’s relaxed, confident demeanor soothed my anxiety about her diagnosis. For the next few years, she did manage her symptoms with the help of her doctor, though I noticed her losing weight, losing hair, losing energy.

So many losses along the way. 

When it comes to lupus, grief and loss can sneak up on you as your life changes in response to the disease. When you don’t have the energy to show up to dinner with friends, you grieve the loss of social connection and shared memories. When the pain steals your joy and you grin and bear it through the day, you grieve the loss of feeling like yourself. When you look in the mirror and don’t quite recognize your reflection, you grieve who you were before lupus. When you have to take a step back from work to prioritize your health, you grieve the loss of your professional identity. Srijana experienced all of these losses, and many more, and I grieved alongside her.

Grief is a common experience when facing a chronic illness, particularly when it comes to living with chronic pain. A loss of agency, cancelled plans, and missed milestones are all legitimate losses that life with lupus might bring (Statz et al., 2022). When things change in our lives, we can find ourselves grieving what once was. 

Grieving the losses associated with chronic illness is unique from grieving the loss of a loved one. While there’s a finality to death, chronic illness continues on, often surprising people with new losses not long after becoming accustomed to previous losses along the journey.

When we experience losses one after another, as can happen with lupus, it can be hard to process each loss before facing the next one, making grief more likely to build up. When grief snowballs over time, the unprocessed and unresolved losses along the way add up and we can find ourselves dealing with what’s known as cumulative grief.  Ongoing support for lupus-related grief and loss becomes an important part of managing the disease. 

There are steps you can take to prevent cumulative grief from overwhelming you, by paying attention to your feelings, acknowledging and processing the losses you are facing, and leaning on others for support. Talk to trusted family and friends about your experience of grief, and seek the help of a licensed counselor, particularly if the emotions feel too intense to manage on your own.

Signs of grief include:  

• Emotional symptoms like shock, denial, sadness, longing, anger, guilt, and even despair.  
• Physical symptoms like body aches, upset stomach, sleep disturbances and fatigue, restlessness, and changes in appetite.  
• Cognitive and behavioral symptoms like social withdrawal, difficulty focusing, remembering, or making decisions. 

You might notice that some of the symptoms of grief overlap with those related to lupus. Any new symptoms should be brought to the attention of your physician to help you identify the source.  

It is important for doctors to carefully differentiate between a healthy grief reaction to a life-changing diagnosis, and clinical depression (Byrne, 2022). Addressing grief early and often is key, as prolonged grief can contribute to physiological symptoms and may exacerbate lupus flares (Peña-Vargas et al., 2021). 

If you find yourself struggling with grief on your lupus journey, here are a few ways to cope:

• Keep a journal. Writing down your thoughts and emotions each day can provide a cathartic outlet for grief and loss. As you reflect back on your previous journal entries, you can better make sense of the narrative of your lupus journey, including the losses and lessons along the way. When we reflect on our life’s story, we are better able to make meaning from life’s difficult experiences, which offers a sense of purpose.
• Engage in mindfulness-based therapy. Mindfulness-based therapies, like Mindfulness-Based Stress Reduction (MBSR) and Mindfulness-Based Cognitive Therapy (MBCT), provide skills like meditation, deep breathing, body scans, and other mindful practices that can help you to reduce stress, manage difficult emotions, and find peace in the midst of grief (Huang et al., 2020).
• Prioritize self-care. Because grief can impact your physical health, as well as your mental health, it’s important to focus on self-care when you’re going through a period of grief. Listen to your body and rest when you need to, eat nutritious foods, stay hydrated, and get plenty of sleep.
• Stick to a routine. Routines support our emotional well-being. Structure and predictability help us feel safe and secure during emotionally turbulent times, helping us to better regulate our emotions.
• Set weekly goals. Regain a sense of control and mastery over your life by setting realistic goals that you can feel good about achieving, whether they involve pursuing a new interest or implementing a positive change in your routine. Small successes can lead to significant emotional rewards over time.
• Focus on what can still be. Letting go of the way life used to be before lupus can be hard. When you’re ready, challenge yourself to identify the possibilities for your future. What activities can you find joy in? How can you use your experience with lupus to help others?
• Lean on your social circle. Leaning on friends and family is one of the most effective ways of dealing with grief, according to research. If you’re involved in a religious community, turning to your religious leaders and mentors can also be beneficial in helping you cope (Benkel et al., 2024). 
• Spend time in nature. Going for a leisurely walk in the woods or on the beach (with plenty of sun protection), enjoying a picnic, or just sitting on the porch and breathing in the fresh air can soothe your soul in the midst of grief. Research shows that even cuddling up with a pet can help to aid in emotional healing (Benkel et al., 2024).

Allow space for your emotions and don’t be afraid to feel them fully before letting go of all that you can’t control right now. Share what you’re going through with your doctor or therapist to receive the support you need to cope. 

I’ll never forget Srijana and her journey with lupus. Unfortunately, Srijana passed away from lupus. It’s true that you can live a long, full life with lupus, and that sometimes lupus can attack your body in unexpected ways, like it did to Srijana’s kidneys and heart.  

Remembering her, and the courage, resilience, and positivity she exuded through the many challenges lupus brought her way leaves me awash in gratitude, even through the experience of grief and loss.  

Journeying through life with lupus can mean facing the depths of grief and loss. But it can also mean discovering joy in finding the support, self-compassion, and resilience to carry on.  

If your feelings are overwhelming, or if you're considering harming yourself, call the National Suicide Prevention Lifeline at 1-800-273-8255 or 988. Find more mental health resources.

If you have questions about living and coping with lupus, contact one of our health education specialists. 

Authored by:
Heather Rose Artushin, LISW-CP

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

This blog post is for educational and information purposes only. Consult with your doctor/health care team for medical advice.