C-support has developed a new fact sheet explaining what Living Loss entails, how it can manifest, and what can help people cope with it. The fact sheet offers recognition for patients and their loved ones, and practical tools for support and guidance.
What is Living Loss?
Living Loss refers to the recurring grief over what someone can no longer do due to long-term health conditions. People with post-infectious conditions such as post-COVID, QVS, post-Lyme syndrome, and even ME/CFS sometimes lose parts of their health, daily activities, social roles, or future plans. This loss is often unpredictable, intense, and not always visible to the outside world. Loved ones also experience changes in their lives and roles, which can also trigger feelings of loss.
Why is this fact sheet important?
Many patients experience Living Loss, but it remains under-recognized by those around them and even by healthcare professionals. Because grief, with persistent symptoms, is erratic, recurring, and often invisible, it can be difficult to cope with. This fact sheet helps recognize these feelings, puts words to what is often difficult to explain, and offers tools to find peace, support, and stability in a long-term, changing situation. Recognition and understanding make the loss more bearable—for both patients and their loved ones.
What's in the fact sheet?
The fact sheet provides an overview of:
- The meaning of Living Loss and how it manifests in post-infectious conditions.
- Characteristics of Living Loss: unpredictability, the constant interplay between hope and disappointment, its recurring nature and its often invisible character.
- Consequences for loved ones, such as loneliness, changes in roles, loss of identity and the search for new meaning.
- Practical advice for patients to cope with emotions and limitations, such as giving space to feelings, avoiding overload and seeking support.
- Tips for loved ones, including listening without judgement, asking specific questions for help and continuing to take good care of themselves.
The fact sheet summarises the essence of what people feel, experience and need when their health changes permanently.
Who is this fact sheet intended for?
This fact sheet is intended for both healthcare professionals and patients. Healthcare providers will receive practical tools for recognizing, guiding, and providing appropriate support during Living Loss. Patients will find recognition and tips for better coping with emotions, limitations, and recurring triggers.
The fact sheet (double-sided A4) can be viewed digitally below. Patients may find it helpful to print it and take it with them to a healthcare provider, school, or other community members to help them understand what Living Loss entails and the impact it can have.
Do you have any questions? Discuss them with your doctor or aftercare advisor.
