For friends and acquaintances
Long COVID and ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) often change friendships too. With small adjustments, you can stay in touch, even when a lot has to be cancelled.
Do not take cancellations personally
The energy of those affected often fluctuates from day to day. For some, symptoms get worse after even minor exertion, often not until hours or days later. This is called PEM (post-exertional malaise).
Even a lovely meet-up can have this delayed effect. That is why cancellations sometimes come at the last minute. The person is often sorrier about it than anyone.
With PEM, overexertion can even cause a lasting worsening of the condition. As a result, the illness can become chronic and more severe. Cancelling can then protect the person’s health.
When people drift away
Among wider acquaintances in particular, people often show little consideration. Over time, some stop getting in touch. People who spend a lot of time at home or in bed quickly lose touch this way.
Think of the person’s partner or parents too. They carry a lot and are easily overlooked.
“I was left unsupported and isolated by everyone … family, friends, physicians – because nobody knew ME/CFS”
Sources: “ME & Long COVID” page of the Schweizerische Gesellschaft für ME & CFS
Contact that takes little energy
- Ask shortly beforehand whether today works for them.
- Keep meet-ups short and calm, for example at the person’s home.
- Keep the group small and quiet, without bright light.
- The person decides when it is time to stop, without having to explain.
- Send messages without pressure to reply, for example: “I’m thinking of you. You don’t have to reply.”
Helping in practical ways
- Ask specifically: “I’m going shopping. Shall I bring you anything?”
- Drop off something to eat, after checking first.
- Offer lifts to appointments or help with letters.
- If the person says no, accept it without taking offence.
Leave out advice and miracle cures
Many of those affected hear well-meant tips again and again, including from acquaintances. Comments like “Just think positive” add pressure and sound like doubt. Listening usually helps more.
Do not send links to miracle cures. So far, there is no treatment that cures these illnesses. Long Covid Switzerland warns against dubious offers that promise a cure.
What hurts and what helps
- Instead of“But you look well.”Better“I’m glad you’re here.”
- Instead of“Everyone gets tired sometimes.”Better“I believe you when you say it’s more than tiredness.”
- Instead of“You should exercise more.”Better“I’ll go at your pace.”
- Instead ofNo longer inviting the person because they will cancel anyway.BetterKeep inviting them and say that cancelling is okay.
Even small gestures show the person that they are not forgotten.
