I’ve been wanting to write this post for some time now, but every time I’ve tried it’s been abandoned as I find my contradictory feelings on the subject so hard to put in to words. I became ill with severe M.E. when I was just 24 years old (I’m now 46). I’d had boyfriends since I was 13 and, when I became ill, was in a serious relationship with a lovely man four years younger than me who I thought I’d probably marry. We were both sporty, ambitious and sociable, travelled abroad on holidays and led busy lives. Then I became bedridden and barely able to speak, think or function. The relationship lasted a further 18 months before I ended it – he just wanted his healthy girlfriend back and I couldn’t bear to see him unhappy or to rob him of his future. It wasn’t even a difficult decision to make at the time, as he was absolutely rubbish in the role of Carer, being immature and selfish and totally unprepared and unwilling to change his life in any way to accommodate my new ‘normal’. That was the last relationship I had so I’ve now been single for nearly 20 years.
The first 6 years I was so incredibly ill I wasn’t capable of being in a relationship, but that didn’t stop me wanting one. I lay in bed alone 23 hours out of every 24 (I had my own home and just saw my Mum for an hour each day as she worked full time) and have never felt such loneliness. Prisoners are kept in solitary confinement as a form of punishment and I can see why. The desire for companionship, affection and intimacy was like a physical ache which gnawed away at my insides until I felt like I’d go mad.
As I started to recover somewhat from severe ME I was able to start to go out socially now and again for a few hours, mainly during the day as, even now, I’m exhausted and ill by evening. I was in my mid-thirties by this time and the desire to share my life with another person was, at times, absolutely overwhelming. I ached to just have someone to simply chat and cuddle and laugh with in the intimate way that couples do. To have someone who thought I was fabulous and funny and amazing. My sex drive was HUGE (probably my body’s way of telling me to hurry up and procreate as time was ticking by 😉 ) but I had absolutely no outlet for it. I did meet a few men I was attracted to, but they were healthy and I was not and it was never going to work: they wanted to go away for weekends, stay up chatting into the night, they wanted to take me out and introduce me to their friends, they were full of energy and had hobbies like mountain biking or kayaking which they wanted to share with me. Gentle 10 minute strolls and being in bed by 9pm to actually sleep rather than fool around is the domain of the elderly, not fit men in the prime of their life.
By the time I hit 40 I’d tried all the usual ways of finding a partner. Match.com and I were intimately acquainted and my soul-destroying experiences with liars, cheaters, the socially inept and the downright weird could fill a whole other blog! It doesn’t help that I live in a very remote rural area where sheep outnumber men 10:1 and are, on the whole, better looking and more intelligent than their male human counterparts 😉 I did get hit on fairly frequently (I used to be a model, and the one good thing about having Ehlers-Danlos is that I have lovely skin and look 10 years younger than I actually am, yayy!) but by people I wasn’t attracted to and had absolutely nothing in common with. I do find that when you’re ill men think you’ll be desperate and will want to shag anything that moves, including them. And yes I am ill and I am desperate, but not blind, or sad enough to have sex with someone who can’t even string a sentence together. As sick as I am I’m just like everyone else, and want to find true love with a soul mate – someone I adore who adores me back.
I’m now in my mid forties and am resigned to being alone for the rest of my life. The yearning, screaming sadness I feel over this has diminished now and a sense of resignation and sometimes even relief has taken its place. Realistically I’m not well enough to be in the kind of romantic relationship I want, and I think if one came along and I couldn’t take part in it fully I’d feel sad rather than happy. In truth I need a Carer, not a Husband. I don’t have the emotional energy to take the problems and life challenges of another person on board, and don’t have the physical energy to give the care and attention to a partner that they deserve and which would make their life richer. Sex for me would be painful and exhausting and I’d worry constantly that it wasn’t happening frequently enough and that they’d get fed up and find someone else. Someone healthy who could give them all the things I can’t. When you become sick it’s hard enough to keep a relationship going when you’re already married, share a history, and have a pre-existing and solid foundation. Trying to build these things in the state I’m in is almost impossible.
My sex drive is thankfully diminishing as I age, but I now haven’t been held by another person for 18 years and it’s that more than anything which I crave. To have someone stroke my skin or my hair would be nothing short of nirvana. I’m grateful not to have the pressure of cooking for another person, but do miss asking someone else to “stick the kettle on” or having someone else offer to cook for me. It’s liberating to not have to worry about my appearance, but I miss someone telling me I look pretty or that they love the dress I’m wearing. I haven’t had an argument for 18 years, but I haven’t had someone hold me when I cry either and tell me it’s all going to be OK.
This post isn’t meant to illicit sympathy (god forbid) and if you tell me not to give up hope that Mr Right will appear I might just try and shoot you dead. What it does aim to do is be realistic about living with severe and chronic illness and the effect this has on love and romance. The long-term sick aren’t often honest about this area of their life, afraid they’ll be pitied or given patronizing platitudes (trust me when I say over the last 20 years I’ve heard them all).
In effect, I became elderly when I was just 24. I live a life shared by many pensioners with ailing health, whose partners have died and whose friends are few. The big difference being they’ve had a whole life before they reached old age, whereas I had 6 brief adult years which is no time at all to live. If this post sounds sad it’s because I am sad – who wouldn’t be. But it is what it is and, just like my health, I have to be accepting of my fate and enjoy the things in my life which are good. I do count my blessings every day, and try not to mourn my losses – it’s a balance I find easier as I mature though one which, if I could change, I would.