By Helen Hyland, Fundraising Manager, ME Association.
Neo is becoming a bit of a mascot for the ME Association. It’s not essential that he travels with me everywhere, but since we’ve lost our old dog (and Neo’s security blanket), we’re trying to include him in as much as possible – carefully introducing new situations and new people – as we hope that this will help him overcome his timidity, and mature.
I am proud to report that he rose to the challenge and excelled at his first official outing. But, then, with such a welcome, it is hardly surprising. We travelled deep into one of our favourite national parks to meet Hilary – who runs the ME Association’s telephone helpline, ME Connect.
Hilary is the kind of person, the kind of kind person, who thinks of everything.
She warmly, and gently, made us both welcome – “Would he manage the step?”, “Does he need water?”, “Would you be better sitting here to give him more room?”, “Is he allowed a biscuit?”
She was determined to put him at his ease right from the outset. And she succeeded so well that Neo was clearly reluctant to leave as our meeting ended.
Hilary is a born empathiser – always putting herself in your situation, thinking what you might need, and acting to help you as best she can. Which is exactly what you need for someone who runs a helpline. It’s hard to teach empathy – it means going beyond sympathy so that you don’t just feel sorry for someone, you put yourself in their shoes, metaphorically speaking, and try to work out what you would do.
She also has M.E., although she manages it very strictly, and it’s obvious that she’s passionate about helping others manage their illnesses as best they can too. “Pacing is IT!” was something she firmly believes and advocates. We talked in some detail about how she managed her own life to make sure that she could take on the things that mattered to her.
Helplines work best when manned (and ‘womanned’) by active listeners. People who know how to get you to talk, to explain the situation that you are in. I found myself being drawn out about my own experiences as a carer: far more than I’ve ever spoken about it to anyone else.
We talked about how many of the fundraisers I now support also have family members with M.E. People as passionate as I am about going the extra mile to do something, anything, to make the lives of the people they care about better. We touched on some the challenges they faced – dealing not just with the practical matters of the illness, but with financial worries, and emotional support for children in families too.
The more we talked, the more our eyes moistened, but Hilary remained most clear sighted when she said firmly, “I hope that people realise that ME Connect is there for carers as well as people with M.E.”. It’s clear that she passionately believes that it is their role to support the whole family and not just the ‘patient’. As best they can.
In my distant past, I did a little counselling training. I remember it being intense and powerfully affecting, and some of the lessons learned have stayed with me throughout my adult life. But my training was nowhere near the scale that Hilary puts her team of volunteers through.
She works hard to support them and to make sure that they are fully up to speed on developments –even appraising them twice often as ME Association staff, just to make sure that they can handle everything that is thrown at them.
ME Connect isn’t just there for emotional support. It should also be the first place you look for any information about the illness and its consequences. Hilary told me how ME Connect volunteers research and write many of the current ME Connect information leaflets.
We discussed upcoming campaigns for fundraising and awareness over the next year or so, and it was clear that not only has she has a wealth of experience at her fingertips – but if there’s something she doesn’t know, she has a solid network of knowledgeable contacts who can help fill in the gaps.
It’s not easy telling a stranger about your troubles. Many of our fundraisers are now fundraising simply in gratitude for the help and advice they received from ME Connect. It’s invaluable. But, knowing what I know now, I dearly wish that I’d had the presence of mind and courage to call ME Connect when Alan’s illness was at its worst.
Neo's Santa Dash!
Why am I telling you this? Because Neo will be facing his fears (and thousands of people dressed in silly red costumes) to race through the streets of Glasgow early next month in the Glasgow Santa Dash.
He will be helping to raise much needed funds to support the work of the ME Association, including our helpline, ME Connect. Invaluable work supporting people with M.E. and their families.
Please give any pennies you can spare in support of Neo’s fundraising for the ME Association.
P.S. ME Connect is a confidential service. Hilary and our volunteers also guard their own anonymity, which is why we’re unable to show you her smiling face in the photograph above.
Here to listen. Here to help.
ME Connect is our flagship helpline service offering support and information to anyone affected by M.E. You can reach us every day of the year and we've managed more than 35,000 calls since we began in 2003. You can also contact us via email if you would prefer – or are better able – to write than speak.
For more information, and to get in touch, please visit the ME Connect page of this website.