Volunteers are at the heart of everything #MEAction Scotland does. We are always looking for more people to help make a difference and support our work in Scotland. Currently, #MEAction Scotland is run by a small group of volunteers, most of whom have ME, with support from the UK coordinator. If you are interested in volunteering or would like to find out more, we’d love to hear from you. Please get in touch or complete the survey by clicking on the link and we will get in touch with you.Take the survey!
The survey is intended to be quick, there are 5 questions and a contact details section.
However, we do recognise that volunteering to take part in advocacy and campaign work can be a daunting prospect, particularly for anyone who is also living with a chronic illness and the many obstacles such illnesses present. With this in mind, we asked Gillian Grant, a volunteer for #MEAction Scotland, if she’d tell us about how she came to be involved with ME advocacy and campaigning:
For those of you who don’t know me, I’m Gillian Grant, a volunteer for #MEAction Scotland . I live in Glasgow and was the organiser of Millions Missing Glasgow this year. I hope that everyone who participated in the event, online or in person has now recovered. I know that it has taken me until now to recover but it was worth it! It was a great day and I thank you all for using your precious energy and taking part.
My Dad has had ME for 25 years and I have had ME myself for 17 years. Throughout this time, I have had periods where I have been completely bedridden and also, thankfully, periods where I would categorise myself as having had only mild symptoms. Four years ago, after having had a long period of mild ME, I relapsed and became housebound again, losing my job as a result. I had worked in law and had taken a long time to get back to where I had been when I had first become ill 17 years ago. Losing my job very much felt like losing part of my identity, the power suits and heels were replaced for pyjamas and slippers and my once sharp brain was again full of fog. I didn’t feel part of the world anymore and felt very lonely and isolated. I realised that I couldn’t go on like this and so as I couldn’t leave the house, I reached for my laptop and this opened up a whole new community. I met people just like me who had lost so much as a result of this devastating illness, who felt lonely and isolated and who by being together on this online community felt that little bit better about the situation.
Once online, I soon met Kim Gurav who was organising screenings of Unrest in Edinburgh, was interested in arranging a screening in Glasgow and was looking for people to help. I was nervous. I hadn’t worked for a while and wondered if getting involved would be too much for me to handle but I was also keen to help. The treatment of ME by the medical profession, politicians and society in general had not changed in the 17 years that I had been ill and certainly not in the 25 years in which my Dad had been ill and I realised then that if I wanted to see changes, I had to help to make that change so I got involved. I worked from my bed, on the computer and on the phone. I paced myself so I didn’t do myself any harm and together with the rest of the team we pulled off a really successful screening of Unrest. It felt amazing. We had made a little bit of difference; I had met some wonderful new people and I had a sense of purpose again.
I then heard about #MEAction Scotland and decided to become a volunteer. At #MEAction Scotland, there is a great group of people, mainly with ME themselves and a couple of healthy allies, who all work at their own speed, supporting each other along the way. Everyone has different skills to bring to the table and even those who think they have nothing to offer soon realise that there is always a role to suit.
The support network is great. I always know that If I am unwell and have to take time to myself I can do so without having to worry about being judged or letting anyone down and the best bit is that we can have meetings in our pyjamas, work from our beds and take as many holidays as we like! We can put forward ideas for projects we would like to work on, work as many or as few hours as we want and choose which projects or aspects of the organisation we would like to get involved in.
That was about 18 months ago and since then I have never looked back. I have met great friends, been involved in some amazing projects and really felt part of something that is striving to make a difference to the lives of people living with ME in Scotland. I don’t feel lonely and isolated anymore. I have a new life and, while it may not be the one I would have chosen, I’m making the best of things.
I really hope to see some of you soon.
Thank you for reading.
Gillian xTake the survey!