What no one tells you about living with chronic illness – Relationships and ME

Maintaining relationships can be a real struggle when living with an illness like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS). It’s hard to keep friends when you can no longer keep up with them. After a while of having to turn down trips to the pub, meals out, and many other things, people just stop asking. What’s even harder is to keep an intimate relationship alive.

I’d been with my boyfriend for 2 ½ years before I got ill.  We were living together, and while things weren’t always perfect, we were happy, in love, and starting to build a life together. When the illness hit, neither of us imagined it would last so long.

Before I got ill I was a very active and busy 24 year old. I had recently been promoted in my job as a Marketing Analyst, I had many hobbies and was out most nights of the week, I was doing half marathons, and cycling everyday. Whilst I would get tired and sick sometimes, I would always bounce back to my busy, active self. When, in December 2015, I suddenly came down with a mystery illness that left me incapacitated, I was getting worried after a few days with no improvement. A few months later when I was still not doing any better, I wasn’t sure how much more I could take. 2 years on and I’m still looking no closer to recovery.

Whilst it has been hard on me, it has also been incredibly difficult for my partner. He’s had to adjust to a caring role that isn’t really a natural fit for him. Many of the qualities he loved and admired in me have been swallowed in the illness: my energy, my passion for life, my intelligence, and my ‘hot bod’. We can no longer go out and do all the fun things we used to do together. Most of our time together is just spent watching TV, as I don’t have the energy to do more. Our life together has become very restricted.

What’s also been difficult is the physical side of our relationship. Prior to my illness we had a very healthy and active intimate life. After falling ill, at first we were less regularly connecting, and when we did I was exhausted after. (This is so uncomfortable for me to talk about!) My urges are still there, but lack of energy makes it difficult. As well as that, being unable to exercise, and probably more than a little comfort eating, meant that I gained quite a bit of weight – something I know my partner wasn’t really happy about.

In the last few months I’ve noticed that he no longer acts towards me the way he used to, in a way that indicated he desired me. It happened slowly and at first I thought I was just being paranoid, but as time’s gone on it’s gotten worse. It came to the point recently where I felt I had to confront him about it. What followed was a heart-breaking conversation where he told me he sees me more as a very close friend now and that being physical doesn’t feel natural to him. He has also said, almost from the very beginning, that he doesn’t know if he can stay with me if I don’t get better.

To love and desire someone and believe they’ll always feel the same, then to find out they don’t is heartbreaking. It’s really shaken, my already dented, self-confidence, and the fact that it’s out of my control is even harder. There’s no easy fix. When we had that conversation I decided to put it in his hands and said, “If you ever want to, let me know”. Every day he doesn’t is another heartbreak for me.

I understand where he’s coming from, I really do. It’s one thing to have a life together then go through the struggles of old age, but for one of you to have ‘old age’ before you’ve even had a life together is devastating. You don’t expect to have to deal with something like this in your 20’s. The future is very uncertain, and no longer seems to hold all the possibilities it used to. I don’t know if I’ll ever be able to have children, I certainly couldn’t be a mother the way I am now. It’s as if my life has been stopped before I even got properly started.

I know of many people who have lost partners due to their M.E.. It’s not an easy illness to endure, for the sufferer or the loved ones. My partner is my rock, and I’m terrified of what would happen to me if we didn’t last. I just have to hope that I will recover my health in time, and that we will be stronger for this struggle.