Chronically Intimate – warning 18+ content 


The very last frontier in chronic illness and disability is the topic of sexuality. If I am honest, it’s even hard for me to write about,  and in a manner that people won’t feel offended or upset.

I was never the type of person who talked about my sex life, until it became a real challenge for all those concerned.

Now, obviously, I can only speak for myself and my own experiences. I am also talking from my own set of symptoms and obstacles, so I don’t assume that I am talking for all those who have chronic illnesses. I hope that I might speak a few common experiences though.

Let me start at the beginning…

Before illness I had what I call a ‘normal’ sex life and sex drive. I like to think that normal includes being a busy, working woman too.

One of the symptoms within my diseases is that I have lost ALL (yes, all) sex drive and only occasionally will the thought of sex even occur to me, and usually in the context of my partner discussing. I feel an enormous amount of guilt about this as it in no way reflects how I feel about him or how much I acknowledge this special part of a relationship…

With much shyness I bought up the topic to our specialists. Nothing could prepare me for how much they trivialized it! I felt flattened.

The doctors we have spoken to about this (only very few) appear to behave as though this was really not a significant issue or even worthy of mentioning. However this “symptom” can potentially destroy marriages and leave chronically ill people without partners or carers!!!

I don’t know what hurt worse. Having no sex drive or being made to think that one was not even worth acknowledging. Like the thought of me talking about “doing it” was beyond the realms of imagination!!

Perhaps, to the healthy world, the thought of sick or disabled people having, or wanting to have, sex is the stuff of jokes or too pathetic to warrant discussing, but it is certainly a factor in how I see myself and my place in this world. It feels like it was another thing stripped from me and wrenched from my life, without my consent.

Now if I had to rate what I miss the most, obviously walking, seeing, independence and such are much higher on the list, but like the old saying goes “sex is like oxygen… You don’t miss it until you don’t have it anymore”.

As a woman, I miss being intimate more. I miss feeling desired or desirable. I miss feeling like my body has more to offer me than just pain and challenges!

Today, the reality is that even the ‘simplest’ sexual act can be quite painful to muscles and joints and requires more strength and endurance than I am allotted in a day (maybe even a month).

If I may be allowed to be deeply personal for a little longer… I have lost feeling in many areas of my body! Important areas for the sex act to be mutually satisfying!

So… What to do?

Without the doctors consideration or assistance; I don’t even broach the topic with physio or OT. We have forged ahead with hope, compassion and a whole lot of humor and understanding!!

We talk about how we feel about each other. We are careful to pick our times and ‘Windows’ of opportunity. I tell my husband how important it is to know that the world still sees me as a woman and that he still finds me attractive… Actually, I think that was the most important thing for me. I need that constant assurance. I feel like this ravaged and damaged body needs to still be ‘appreciated’ by the eyes that mean the most to me. To think that my body has left me stripped of a sexual reference and genderless would add further insult to serious illness.

As part of our ongoing conversation and exploration into this area we visited a lovely and helpful lingerie store that have always been so caring and open minded. I have NEVER had an awkward moment from the very first moment I placed a wheel into the store!!

We were surprised to see that technology and forward thinking has caught up to the world of ‘sex toys’ and they are far more user friendly and accommodating to those with agility and strength issues.

The new range of toys are easy to operate with fewer buttons, softer, easier to hold and are designed for hands that are not able to move as easily as those needed for those ‘clunky’ old 80s gadgets. And… The massaging benefits from simply placing them on an aching joint or muscle is sheer bliss!! For that alone I am willing to pay good money. I actually held one of the high tech devices over my aching wrist and fingers and let it vibrate away the entire time I was in the store! 😃 ecstasy!!

So… In summary. It has taken me a long time to write about this topic because I wanted my readers to understand who I am and where I come from before tackling a topic like this. I want people to know with everything I write I do so from a place of sincerity and compassion. And… I write honestly and emotionally.

It is a very devastating thing for a woman to feel unwanted, unattractive and unsexy in a world obsessed with sexual images and validation. As our illnesses fluctuates, our weight fluctuates and our egos deflate, we want to know that our partners think we are as lovable and as beautiful as we once were.

For me, love and sex are different branches of the same tree. Respect and commitment are still at the basis of the relationship, but knowing my partner still finds me attractive is also very important. Attractive mentally. Attractive emotionally. And attractive physically.

I think that no matter how difficult our circumstances have become our strongest tool has always been our ability to communicate and empathize with each other and it is my sincerest hope that it will always remain so.

Thank you to my husband and the lovely ladies at ‘Honey Birdette’.

You all rock!!

Gentle hugs

Trish

5 thoughts on “Chronically Intimate – warning 18+ content 

  1. I understand where you’re coming from Trish…. I’ve basically been in menopause for the last sixteen years. My pituitary gland stopped working and I’ve basically had no sex drive for that time but have thought about investing in some sort of vibrator, just to try and keep myself from shrivelling away! I often feel if I was well enough to actually meet someone, I’d find it extremely difficult to start any sort of sex life. Sometimes I just think it’d be nice to lay and have a cuddle from a guy. I miss that. As you said though it’s a topic not really discussed! I guess I’m too embarrassed to know where to start looking. Any tips would be greatly appreciated? Hope this doesn’t get blasted all over Facebook though. Not sure how it works, keeping some of our discussions between each other without it going out to everyone?

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    1. I understand my dear friend. Your words and feelings are safe with me. All I can say is that at our age and experience we CAN find such compassionate souls out there. They DO exist. Those that value companionship and integrity above all. Love is a stronger bond than anything physical can thrust upon us. I truly believe this. 💐 don’t change that character. Ever. Hope and compassion are vital in these illnesses

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  2. We all deserve to feel loved sexy and pleasured .

    Why be embarrassed ???

    Cos it’s the way we were brought up ????

    That’s all

    Bye sexy peoples

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  3. I might offer the #chroncisex chat on Twitter as a place to discuss these topics. It is respectful (almost all women except I drop in to say I am supportive) and full of information. Thursday evening eastern US.

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