The Intimacy and ME/CFS article was ‘so honest and absolutely spot on’

Anonymous Feedback

I read the article ‘Personal Relationships: Intimacy and ME/CFS’ and by the end of it tears were pouring from my eyes.  

It is so honest and absolutely spot on. I had been single, and suffering from ME for many, many years when I met the man who is now my husband. 

I think my experience is that the disease has robbed me in terms of how I see myself as a woman. Before I was ill, I had a busy career and loved looking my best and taking care of myself.  

For women, I think looking good and feeling attractive is linked to your libido. When looking good means having clean hair and a fresh nightie on, and that’s the best you can manage, it doesn’t make you feel desirable. 
 
As well as dealing with a whole host of other issues, and hormonal changes, your desire for someone you really love tends to fall off a cliff.  

Couple that with wondering how they may still want you with greasy hair, untamed eyebrows, and hairy legs… well, it’s hard to be a ‘femme fatale’ when you can’t even cut your own toenails! 
 
During lockdown, lots of healthy women have talked to me about not being able to access hair and beauty appointments, putting on weight, being bored, and lolling about in loungewear. It’s actually been a great leveller. 
 
I think for any partner it’s a challenge and caring means feeling taken for granted, too. Any needs that arise are quashed. It’s a bit hard to approach someone for sex when you’ve just rescued them from the bathroom floor… again! 
 
Humour and communication are key. I find sex to be painful, and the idea of the ‘whole shebang’ is too much for me. Avoiding it altogether has damaged my marriage.  

Physical intimacy of any sort counts. Sometimes my husband just wants me to place my hand on his shoulder when we wake up. In these difficult times, we are lucky we can share that. 

Physical intimacy of any sort counts. Sometimes my husband just wants me to place my hand on his shoulder when we wake up. In these difficult times, we are lucky we can share that. 

Sex is never really like what you see in films or on TV, is it? He’s never going to sweep me off my feet like Richard Gere.  

If he has to carry me, it is another kind of rescue. I’m hardly Uma Thurman in that famous rubber catsuit. I mean wearing a waterproof bib isn’t exactly the same, is it?! 
 
Your article reminded me that I’m not alone with these thoughts and struggles. And that talking and listening matter most. 
 
I may even pluck me eyebrows in celebration! My husband will think I’m getting ready for a red carpet…. 
 
Thanks again, 

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.