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.

Me pre-illness, modelling wedding dresses

Me pre-illness, modelling wedding dresses

By the time I hit 40 I’d tried all the usual ways of finding a partner. 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.


7 thoughts on “Love

  1. Patrice

    Dear one, I know, an odd address… but I don’t know your name and the more I read your posts the more you become dear to my heart in that ethereal way the the Internet plus beautiful writing can create.

    Your post is one of the most touching I’ve read. You have soulfully described losses so many of us with chronic illness must come to accept. I ached when I read about your very normal and basic needs for touching, hugging, companionship and sex.. I understood immediately when you described your experiences with online dating and rural living because I was thinking “but for the grace of god….” Ironically, I owned a farm in a rural area when my husband and I met 9 years ago on, when I was still healthy, vigorous and able to enjoy sex.

    I have tears in my eyes because I feel the depth of your loss and it is a huge loss, an unfair loss and you don’t deserve it. None of us do but most of us didn’t get this in our twenties, we were able to live out many of our dreams which came to abrupt ends early, they weren’t extinguished before they started like yours. I am so sorry for your huge loss of the physical and emotional joys of intimacy, something many take for granted. Though it can give little comfort, know that I embrace you in my heart and wish I could come by to drape a blanket around your shoulders, put the kettle on and read you passages from a book we both admire, then share long conversations and genuine hugs.

    This is such a hard disease to live with. The losses seem more than a person can bear, not only must we give up the basic pleasures of traveling and tasting delicious foods but we are robbed of enjoying the warmth of the sun and the scent of exotic perfumes, we can no longer garden, run in the morning mist or stay up late laughing and drinking wine with friends. I know.

    Liked by 1 person

  2. wendy kase

    You’re certainly not alone….. It was a bit painful to read your post, as I have been there, too. It gives me an idea, however, for creating a web site for upbeat people in our position who want “company”! No sad sacks, though. Only upbeat people who also have “situations” that require a special kind of understanding. What do you think about this?


    1. bertieandme Post author

      Hi Wendy

      Sorry to hear you’ve been in a similar position – it sucks! When I was doing online dating I found about 100 women to every 1 man in this position. Women, generally (and I am generalising), aren’t put off by illness in a partner and also tend to stay married to sick men. Men, on the other hand, generally can’t deal with it and either leave their wives and find someone else or, if single, don’t even entertain having a girlfriend who’s ill (particularly in the over 35s where there is stiff competition for good single men, as by then they are so few and far between lol!). So I’d guess any site would be full of women 😉 But if you’re just looking for friendship it would work x


    2. addercatter

      I’d love to participate in something like that. My life, too, has been forced into a daily pattern of that of someone very old and sick, not the 34 year old that I chronilogically am…


  3. YvonneK

    I just want to say that your post made me very sad and i cannot imagine how painful it must be for you. I am in a similar situation, at 24 living with severe illness. I dont know what illness i have as yet, but i share most of your symptoms and concerns. I feel very sad that things like these have to happen to good people and i trully hope that one day you will feel well again and meet someone wonderful who will understand what its like to live like this, someone who will just comfort and support you and love you for being you. I have someone in my life, but who is abusing me emotionally and i dont have the energy to end it. I hope that i will get better one day.

    Good luck on your journey


    1. bertieandme Post author

      Hi Yvonne

      Thanks for commenting, I truly appreciate it. You are the same age I was when I first got ill 20 years ago. My boyfriend wasn’t abusive, but he was unsupportive and uncaring. Getting rid of him gave me the opportunity to concentrate on me, and not waste emotional energy (which is very tiring when you’re sick). I do hope you can find the strength and energy to end your relationship if it’s not nurturing. Better to be alone than abused 😦 Hugs.

      Jak x



Leave a Comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.