Self-help groups can help to endure long Covid symptoms

How would you absorb the upending of your life brought about by the more disruptive forms of long Covid?

People are often told to accept their condition – but in the earlier stages, that must feel like being advised to run up and down Croagh Patrick in your bare feet by someone who has never had to endure such an experience.

I was interested by an article in the British Medical Journal which suggests to me that very small support groups made up of people with long Covid have a lot to offer those struggling with this condition.

Estimates of the percentage of people who go on to suffer long Covid range from 10 per cent to figures far higher .The fact is, it’s early days – we don’t really know what the prevalence is.

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Fatigue and muscle weakness, sleeplessness, anxiety and depression seem to be the most common symptoms – according to Chinese research quoted in the Lancet – but others occur also. Brain fog, for instance, can make it hard to think clearly, can make normal activities including planning and thinking harder to do, and even emotions may be dulled. Some experience pain and breathlessness.

If you look at that list and ponder it for a while, you can see how badly some forms of long Covid could disrupt your body and your life. That’s the life in which you need to go out and earn money, or in which you need to look after children, or in which you long to pursue your favourite interests. If all that is utterly disrupted, the emotional toll can only be enormous.

Weekly online

The group that caught my eye was created by just four people with symptoms such as cardiac issues, brain fog, sleeplessness, stomach problems and fear of leaving the house.

The four members, three of whom work in medicine, agreed to keep the group small and met weekly online for 20 minutes, messaging in between.

The group – which describes itself as a self help “pacing” group – has been a game changer its members write on the BMJ website.

They accepted that the symptoms could last for longer than they originally hoped

For instance, the group pointed out to one member that he was using up way too much energy working five hours a day and then walking five kilometres. They encouraged him to cut down. At the other end of the scale, two group members who had been afraid to go out started some gentle walking outside and gradually extended it. The person with heart issues walked each day to a nearby beach to listen to the waves and watch the sun go down.

Two group members were overdoing it at home (always putting the children first) or at work. They learned that to stay healthy they needed to give less attention to the children and to rely more on colleagues at work. They talked about routines to help them get enough sleep. Each also bought a wearable device (similar to a fitness wristband) to measure how much energy they were using up through the day, and they slowed down when they spotted their reserves going too quickly.

They accepted that the symptoms could last for longer than they originally hoped and that recognition “was an important step and helped us make realistic goals, relieving the anxiety around the slow speed of recovery”. In this case acceptance grew out of their own experience.

Safe place

Guilt entered the picture too. Members sometimes felt guilty about telling others they had long Covid, fearing they mightn’t be believed or even made themselves responsible for preventing the other person from worrying about them.

“But in the group, we can moan about our headache or malaise – it is a safe place to talk about this, to vent our frustration.”

What’s especially interesting here is that this is not just a “moaning group”. It’s a self-pacing group in which members may moan but are also encouraged to move forward, though without overdoing it.

– Padraig O’Morain (@PadraigOMorain) is accredited by the Irish Association for Counselling and Psychotherapy. His latest book is Daily Calm. His daily mindfulness reminder is free by email (pomorain@yahoo.com).