This blog post summarises the key insights from the latest Virtual Education Session (VES) presented by Laura Dyas, a Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) training director and SPIN-SSLED English program instructor. She has an extensive background in grief and loss and work in the state of Michigan, starting her not for profit career in the adoption field, working both domestically and internationally. Laura also spent 13 years running a women’s crisis center, helping thousands of women faced with unplanned pregnancies to actively change their lives. Further, she created a GED program, helped her clients find employment, and wrote an educational parenting curriculum before focusing on a career in scleroderma in 2008.

In 2017, she began working for the Scleroderma Patient-centered Intervention Network, known as SPIN, where she still helps people every day.

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Living with scleroderma is a deeply emotional journey, often intertwined with feelings of grief, loss, and adjustment. While grief is commonly associated with the loss of loved ones, those living with chronic conditions like scleroderma also experience a form of grief tied to the loss of health, independence, and the life they once knew. This is a complex and personal process, but through support, self-reflection, and compassionate guidance, it is possible to find ways to navigate these emotional challenges.

The Unseen Grief of Chronic Illness

Grief isn’t always about death. For people with scleroderma, it often manifests as the loss of normalcy, of a sense of control, and the body’s ability to function as it once did. This session discussed how many patients feel misunderstood by those outside their community. Simple daily tasks like unpacking the dishwasher, which others may take for granted, become monumental challenges. This sense of loss is not always acknowledged by those around them, which can lead to isolation and emotional strain.

Some key takeaways from the session included:

  • Grief as a Nonlinear Journey 

Grief doesn’t follow a set path. It may fluctuate with emotions like sadness, anger, and confusion. Grieving is unique to each person and can often feel unpredictable. External triggers – such as medical news or memories – can stir up intense emotions at any point.

Many of us have heard of The Five Stages of Grief, based on Kubler-Ross’s well-known stages – Denial, Anger, Bargaining, Depression, and Acceptance. These emotions, however, are not linear. For instance, one might feel anger right before acceptance, or experience multiple stages simultaneously.

Here’s how these common emotional responses may arise in a scleroderma diagnosis:

   – Shock and Denial: Initially, denial helps manage the overwhelming news of a diagnosis. It serves as a protective mechanism but can also cause confusion and disorientation.

   – Pain and Guilt: After the initial shock, individuals may face raw emotional pain, sometimes accompanied by guilt, especially when others expect them to return to “normal” life too quickly after a diagnosis.

   – Anger: Anger often surfaces when life changes unexpectedly. People may feel frustrated with the perceived unfairness of their situation.

   – Bargaining: Individuals may try to find ways to “negotiate” their health – questioning if certain actions can reverse their condition or improve their well-being.

   – Depression vs. Grief: Laura differentiated between clinical depression and the sadness that naturally accompanies grief, especially following a diagnosis like scleroderma. She encouraged people to seek help if they felt overwhelmed or unsure if they were dealing with clinical depression.

Tracking these feelings, and their physical manifestations, is important to identify trends and communicate effectively with your healthcare professional. 

  • Letting Go of Negative Emotions

One powerful metaphor Laura introduced during the session was the idea of carrying a backpack filled with emotional burdens. She encouraged participants to imagine dumping that backpack out, shedding the weight of anger, sadness, and frustration. She suggested symbolic acts to release negative feelings, like writing them down and either burning them or letting them go in a balloon. These rituals, though simple, help create emotional space, allowing individuals to focus on finding joy and peace despite the daily challenges they face.

One support group member resonated greatly with this idea and shared her experience of realising that simply reading about grief and loss wasn’t enough. Intellectual understanding didn’t equate to emotional healing. It was through asking questions and engaging in reflective practices that she began to process her emotions more deeply. This is something that many people living with scleroderma will understand – you can read all the books and know all the facts, but it’s the lived experience and emotional processing that truly matter.

Communication is another key part of releasing negative emotions and navigating grief. Expressing feelings honestly and openly can help ease misunderstandings with loved ones and caregivers, as well as help tackle feelings of isolation. This positivity should always be balanced with the freedom to experience emotions as they arise, however.

  • The Power of Support Groups

One key message that came out of this session was the importance of creating a space where people with scleroderma can share their experiences and feelings openly. Many participants expressed how they felt seen and heard in this supportive environment, with Laura’s guidance helping them make sense of their emotional responses.

Support groups are vital for people living with chronic illnesses, as they offer a safe place to share both the small wins and the big struggles. In these groups, members can find a tribe of people who understand exactly what they’re going through. Whether it’s offering a listening ear, sharing helpful advice, or simply being there to nod and smile, support groups provide an invaluable network of emotional solidarity.

Laughter and joy is a crucial way to navigate grief, so finding small moments is essential to heal emotionally. Perhaps consider reaching out to people from your support group to share light moments, such as watching a funny show together. You could do this in-person, or discuss moments from a recent episode next time you’re together.

  • Finding Peace Amidst the Struggle

Ultimately, Laura’s message was one of hope and self-compassion. While it’s impossible to remove the grief that comes with chronic illness, it is possible to find peace within ourselves and create space for joy. She encouraged participants to take each day as it comes, to celebrate small victories, and to focus on what they can do rather than what they have lost. Finding peace is a personal journey, but it begins with the willingness to let go of negative emotions and focus on the present moment.

Another idea presented was to have a “Celebrate Me Day.” This concept encourages self-care during difficult times, and acknowledges that sometimes doing nothing is a necessary form of rest and recovery. Further, gratitude practices, like making a gratitude jar, can help you appreciate your achievements and progress, even on difficult days. This focus on what you can do today is essential in navigating grief, rather than being stuck in the past or overly focused on an uncertain future.

Living with scleroderma can bring intense emotional challenges, but recognising grief as a natural part of the experience can make it easier to navigate. By leaning on support networks, practising self-reflection, and engaging in activities that help release negative emotions, people with scleroderma can find peace within themselves. Remember, you don’t have to face it alone – your tribe is out there, ready to offer support and understanding when you need it most.

For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area here. 

If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions here.

These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.