Learning from people who know about isolation

Written by: Avril McLean, Project Worker, Mentor M.E. Peer Support Network, Action for M.E.

Published: 19/05/2020

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Avril reflects on how COVID-19 has changed the way in which Action for M.E. support people during these challenging times.

Like everyone else’s, my job and everyday world has change dramatically as a result of the impact of Coronavirus. Normally I work on the Mentor M.E. project (this link will take you away from our website), training and supporting volunteer peer mentors and the people they support. Now I am also answering daily phone calls and emails on our new Crisis, Support and Advocacy service (this link will take you away from our website). Through this service we hope to respond to the needs of people living with M.E. during this crisis.

I’ve worked with people with M.E. since 2016 and I am continually impressed by how resilient, informed and constructive they have overwhelmingly been. During the crisis we have been calling our organisation’s members and been very impressed by their organisational skills and planning. They have so much insight and experience to share, with many of them being reluctant experts in living with isolation and uncertainty.

I have learned such a lot while working here and would say that my knowledge of self management has really increased as a result. This is due to listening to people who really need to self manage to have any quality of life.

Many people with M.E. are isolated all the time. This is because they can’t leave their home or sometimes their own bed due to the impact of M.E. Many also face disbelief and misunderstanding around their health condition. People can lose their jobs, family and friends and what they had in their lives before M.E. as a result. Yet, despite that, many have found something else. Some people have volunteered as mentors to support others and some have set up and run support groups and organisations to improve things for those like them.

One of things that has come up frequently in my chats with members, volunteers and mentees is their concern for others, particularly people who might get M.E. as a follow on from being infected with Coronavirus. Many have offered to support any campaign to get more recognition, services and support in place, to offer people with a new diagnosis an appropriate route back to their health and the care and support they need.

This is our and their hope, that people with M.E. can be supported to live their best life and to have the resources they need to manage their health and to stay in contact. So that they too can re-join the world once Coronavirus has lessened rather than remain in lockdown.

Read more about Action for M.E.’s new Crisis, Advocacy and Support service.

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