Published in InterAction 77 (Autumn 2011)
Maintaining a love life can be hard enough, even without M.E. Jane Bennett takes a look at the impact of the illness on relationships.
When I was asked to write this article about relationships and M.E, I jumped at the chance. I’ve had M.E. for four years and during that time I’ve been single, in two unsupportive relationships and am now happily with a very understanding boyfriend.
M.E. makes everything harder, including relationships. All of a sudden, you’re not the person you used to be. Your world is thrown upside down. This is hard for anyone to deal with but it also impacts on those who love us, particularly boyfriends, girlfriends, husbands, wives and partners.
Going from being a busy, active person to one who is bedbound can irreversibly change a relationship. Ms B found this out when her husband became her carer.
“I have four children – two boys and two girls,” she explains. “The boys have ADHD and when they were wee they had physical disabilities as well, which meant a lot of work.
“When I became ill with M.E., a lot more work had to fall on my husband. He had to care for the children and care for me as well – I was bedbound for a lot of the time.
“If I didn’t have M.E., we might still be together. While we were carers together, we made it work. But when I got ill, he felt so put on. He had to give up his job to care for me and the children and he really resented that.
“He didn’t understand M.E. – he thought I just wasn’t trying hard enough. I felt guilty because I couldn’t help and I didn’t feel like I could ask him for anything.
“I was offered a carer but I didn’t want a stranger looking after my personal care when I was only 34 years old. I know he resented that but it would have made me deeply unhappy – I was too proud and too frustrated.”
Living the single life
Finding yourself on your own can be extremely difficult, especially if you’ve been relying on the practical and emotional support of a partner.
That said, after the initial shock, I felt quite relieved when an unsupportive ex walked away. With only myself to consider I didn’t feel like a burden anymore. I also didn’t feel I had to constantly justify the fluctuating nature of my M.E.
Shena MacDonald is embracing her single life, taking the opportunity to focus on herself and develop a newfound self-respect: “For the first time in my life, I am content now. The frantic search and need to be part of an ‘us’ is gone.
“I discovered that when I’m always searching for something/someone/ what-might-be (and using up SO much energy in that process!), I’m not making space for what is. What is, is okay – different, not limited.
“I trust that if it is meant to happen, it will and maybe now is not the time. Maybe now is MY TIME to figure out what my condition is trying to teach me about life and love and to learn from that. It has given me this space to be in, peacefully. You see, the hero was there all along. INSIDE ME!”
Stacy Hart also says that “life as a single person is as good as you want to make it. I can walk around in my undies, scratch when I want to scratch, sit and play my pot belly like a drum when a good tune comes on the radio.
“I can eat chocolate and biscuits in bed, have the covers to myself, leave the light on all night if I choose, have full control of the remote.
“Time is mine and mine alone and on good days I can share it with the people I want to share it with, do some voluntary work, enjoy lunch with the girls or just chat on the phone.”
Friends are important when you find yourself on your own. Having M.E. makes you realise who your true friends are. The real ones understand when you can’t take part and are there for you when you need to talk.
When I split up with my ex I decided to focus on my friends rather than finding a new partner. I was subsequently much more content with life than I had been before.
Looking for love
Some of the advantages of being in a relationship are having someone there to take your mind off things as well as practical and emotional support. If you’d like to be in a relationship but have no clue where to start, you might be surprised by the places InterAction readers have found love.
Take Ms B, whose husband left her alone with her four children: she has been enjoying internet dating. “I would say it’s better to tell other people about your M.E. right away – that way you can sift the frogs out and find a prince. You might find some friends, too; the focus doesn’t have to be on finding a partner.
“Other people have baggage too, especially when you get past 30. Just because you have M.E. it doesn’t mean that you will be by yourself forever – you can find someone that will accept you for who you are, who will look beyond the M.E. to the individual.”
I met my boyfriend through online dating and I’d echo what Ms B says. In a strange way, having M.E. can help you find someone who really loves you for who you are.
The two exes who made a swift exit obviously didn’t really care about me. If I hadn’t had M.E, who knows how long it would have taken me to figure that out!
If you are able to use a computer then social media sites such as Twitter and Facebook can also be an interesting place to meet a partner. I put a post on Twitter about a year ago, asking whether my followers had had any luck with dating and M.E. Off the back of my tweet a guy and a girl, both with M.E, started chatting and ended up dating.
Amazingly, Alan Timms met his wife 12 years ago through the pages of InterAction! Alan’s wife-to-be sent a letter that was published on the letters page, looking for a pen pal. “Our weekly e-mails became daily, and after six months I flew out to meet her,” Alan says.
“My friends pointed out that fiona@hotmail. com* could be some bloke in Watford with a warped sense of humour and a lot of time on his hands but I arrived in South Africa for a month’s visit, stayed for two and we have been together ever since.”
Love in my local group
Julie Cosworth also found love in an unexpected quarter. “My first marriage broke up because of M.E. but I met my second husband at my local M.E. group. We have been married nearly 10 years now and reckon we make one fully functioning human being between us!”
It just shows that even though you might not be able get out and meet people through traditional dating channels, there are many different places where a relationship can blossom.
The love of your life could turn out to be a friend of a friend or a member of an M.E. support group in your local area.
You may feel you don’t have much to offer a potential partner but I think you’re wrong. I have discovered that people with M.E. have developed key qualities that are vital to successful relationships. I now appreciate the smaller and more important things in life. I don’t feel as much need to rush around being busy and enjoy just sitting and spending time with my boyfriend.
People with M.E. tend to be caring and understanding because we appreciate these qualities in others. Having M.E. doesn’t have to be a limitation when it comes to relationships. Yes, it can make things much more difficult but it also makes it all the more worthwhile in the end.
About the author
Jane Bennett, 30, lives in Manchester with her flatmate Jo and works for a not-for-profit organisation campaigning on behalf of small businesses. She loves travel, reading, writing, walking, swimming, knitting, looking after her parents’ dog Samson, meeting up with friends and strumming on her guitar.
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