ME/CFS or Long Covid are often invisible conditions, which means people may not realise the impact symptoms have on daily life. This can make explaining your condition to family, friends, colleagues and professionals challenging.
Having a simple way to describe your condition and your needs can help others understand how they can support you.
A simple explanation
Many people find it helpful to have a short explanation ready, such as:
“ME/CFS is a long-term condition that affects energy, causes a range of symptoms, and can worsen after physical or mental activity.”
Or:
“Long Covid or ME/CFS can affect energy, concentration, sleep and everyday activities, often in ways that aren’t visible to others.”
Helping others understand
It can be easier to explain:
- What symptoms affect you most
- What activities you can currently manage
- What support helps you stay well
- Why rest and pacing are important
People may not fully understand the condition itself, but they are often better able to understand practical examples of what you can and cannot do.
Explaining your needs
Examples might include:
- Needing regular rest breaks
- Limiting time spent on screens or in social situations
- Avoiding sensory overload from noise, light or busy environments
- Using pacing to manage energy levels
- Taking longer to recover after activity
Clear communication can help set realistic expectations and reduce misunderstandings.
Talking about ME/CFS or Long Covid at work
If you’re employed or returning to work, you may choose to discuss your condition with your employer.
This can help you:
- Access reasonable adjustments
- Discuss flexible working arrangements
- Explore support such as phased returns to work
- Access schemes such as Access to Work
You are entitled to confidentiality regarding your health information and support is available under equality legislation where appropriate.
Dealing with misunderstanding
Unfortunately, some people may not fully understand ME/CFS or Long Covid. Remember:
- Your symptoms are real, even if they are not visible.
- You do not have to justify your illness to everyone.
- It is okay to set boundaries and prioritise your wellbeing.
- You are the expert in your own experience.
You do not need to explain everything about ME/CFS or Long Covid for people to support you. Often, helping others understand your symptoms, limits and support needs is the most effective way to build understanding and protect your energy.
Find out more:
Action for ME – Talking to Others About ME
Source: Information adapted from Action for ME’s Talking to Others About ME guidance.