Carers and allies, such as family, friends, colleagues, and educators, play an important role. When people understand the situation, they can offer patience, empathy, and practical support. Education helps reduce stigma and create a more supportive and connected environment.
Caring can take a lot of time and energy, so many carers put their own needs last and may find it hard to ask for help. The first step is to understanding the energy limits of ME/CFS and long COVID.
People with ME/CFS and long COVID don’t make as much energy at a cellular level as a healthy person. Their body is like a battery that never fully recharges and drains faster than normal.
When their ‘battery’ gets low, their symptoms get worse and their ability to function and move their bodies declines. If they keep pushing even though their battery has drained, they will ‘crash’. This is the ‘red zone’ known as post-exertional malaise (PEM), when complete rest is the only safe activity.
People with ME/CFS or long COVID are not able to do all of the activities they used to be able to do. They can experience an increase in symptoms after simple activities, which would not have been a problem before ME/CFS came into their lives.
Remember – your friend’s battery is different from when they were healthy. What they can do in a day will be less than before. Every day is different and having friends who understand and are flexible makes an enormous difference.