People with M.E. experience isolation for all sorts of reasons. They may be too unwell to physically leave the house very often - or at all. Others have had to stop work and reduce their social contact. Most tell us that they sometimes feel alone because their friends, family and colleagues don't fully understand the impact of M.E. You can hear from two people who have the illness and a carer in our awareness-raising video, which was produced as part of M.E. Awareness Week 2016.
Action for M.E. is here to help.
We asked people with M.E. what would help make a difference and, as part of our 2016 M.E. Awareness Week campaign, came up with a list of top ten actions you can take, right now, to reduce isolation for your friend, family member or colleague with M.E.
(If you have M.E. yourself, read tips, ideas and advice from other people living with the illness about how you can reduce isolation).
“The social element of my life has diminished, but the friends I do have are caring and considerate, real friends who I have a real connection with.”
1. The person you know with M.E. is still the same on the inside: what was it that brought you together in the first place? Could you re-connect with them right now by sending them a message?
2. Let your friend or family member with M.E. talk about how they are feeling. Having to pretend they feel OK is exhausting.
3. Understand that planning ahead can be challenging when you have M.E. Being as flexible as you can will make a big difference.
4. As much as they want to see you, some people with M.E. are too ill to have visitors. Write them a letter or send them a message so they know you are thinking of them.
5. Even if you know your friend or family member with M.E. can’t come to an event, they might still like to be asked. Is there a way you can include them?
“Because I've not been able to go out with friends, they don't invite me any more; you get forgotten about and life comes to a standstill. I don't want sympathy, just a bit of empathy.”
6. Let someone with M.E. talk about their illness if they want to – they might not have anyone else willing to listen.
7. A place to rest, an accessible venue, the option to leave early or arrive late: these simple considerations could make all the difference to someone with M.E. next time you arrange to do something together.
8. One of the reasons M.E. can be so isolating is because people often don't get why it's such a challenging condition. Learning a little about M.E. will help you understand why the huge impact it has on every area of a person’s life.
9. Send a card or text to someone you know with M.E. and let them know you are thinking of them – and that there’s no pressure to reply.
10. Could you play a game online with someone who has M.E.? Even if they can only manage it once a week, it could help them feel much less isolated.
“One of my friends has played back to back games of ‘Words with friends’ with me for more than two years. He lives three hours away, but that little bit of contact has really kept me going."