Let’s talk about sex! #sex #survivor #respect #love #compassion #chroniclife #autoimmune #disability

Warning: Some readers may be offended so if reading such material offends please stop now and skip this post!

If your still reading this post then you should know some things straight off the bat. 1. These are not easy topics for anyone, let alone someone who is physically challenged and I should add this is not an easy topic to share with the world 2. I am going to attempt to talk about this topic in the most sensitive way, after all it is my personal life and so I am making a very brave step. 3. The only reason I am doing this is because I hope it helps others who might find themselves in physically difficult situations and with painful conditions, 4. I do not pretend to be a sex therapist or counselor, I am just one person on a mission, that being to make one group of people aware of the challenges we go through, and to make the other group feel like they are not alone. So with that in mind, let us begin.

I want to make sure that when I write about this topic I am very clear that I have very different definitions and experiences of the following terms. Sex. Love. Intimacy. Although they are often closely linked and blended, to me the words are very separate and have very different meanings to me and to my hubby. Sex to us is the physical act of intercourse. Love is a feeling. Intimacy is how deeply you expose yourself, your true self, your thoughts and your feelings to a person. For me personally, Intimacy is by far more a deeper, revealing and rewarding experience and therefore I have only shared true intimacy with very few people (including my husband).

Our sex lives prior to my health changing is what I would describe as being normal and healthy and I had no complaints other than time constraints caused by work and other commitments. Our sex life now is very, very different. Speaking for myself, I have quite a lot of physical challenges to overcome to have sex with my partner. I have pain issues relating to my joints and the most damaged are my feet, hips, knees, shoulders, back and hands. My muscles spasm and tremor unpredictably. Since my autonomic nervous system is damaged, it means that I no longer have a sex drive, my balance and breathing is affected. I also have numbness which affects various parts of my body (yes there too). There are some other factors but I think I have illustrated enough to show you that my hubby and I have had to be careful, sensitive, kind, supportive and understanding in order to have sex. Thankfully I have one of those men in my life that has taken a very loving and compassionate attitude to my challenges which is why I try very hard and can put myself through a lot of pain in order to return that compassion. Although each time we have sex there is always a price that I will have to pay, physically, no exceptions, I consider those times as ‘worth it’ because it shows my partner how much he means.

I can remember when I spoke to a specialist about some of the symptoms I was experiencing, I nervously started reading off a list starting with migraines (I cant say that word without my stomach turning… arggghh) and then finally, nervously I told him about my sexual challenges. He stared at me as though I had just told him about the weather. He quickly changed the subject and dismissed my comments and I don’t know what was worse, telling him about a very real challenge that affects my relationship with my husband and potentially the future of my marriage, or the way he blithely dismissed it. It was extremely dehumanizing for me.

I wont lie and say that my hubby and I have the same amount of sex we had years ago or the same ‘type’ of sex, and it has almost completely lost any semblance of spontaneity, but what we have lost in sexual activity we have gained in Love and Intimacy. Sometimes I joke with my hubby and say “this must be what elderly 90 somethings must be like when the topic of sex is discussed. Especially when I have had more hot cups of tea then hot sexual moments, but I can’t let myself dwell too long on this and I have had to forgive myself for what I can not control. Please don’t think this was an easy process and happened overnight; it took years. To find this place where we are today its taken soul searching, talking, crying, embracing, reinventing, rethinking, re-imagining, and constant commitment. I don’t expect my husband to stop being a healthy and normal man so there is no room for being judgmental on each other and no matter how you choose to rise to these challenges yourself, I urge you to talk openly, honestly, respectfully, kindly and compassionately with each other. Put yourself in each others shoes and be prepared to explore different options and ideas and set your own rules.

When our lives changed forever, we had to ask ourselves what was more important, clinging to our old ideas and understanding of a sex life or choose to value the Love and Intimacy you share as a married couple and closest of friendships. We choose to value our relationship and that is why we are here today, together and we value each other more than fear any challenge that life puts in our way. I remember the old saying ‘marry your best friend’. We did. And that is why we are still together today.

Gentle hugs,


2 thoughts on “Let’s talk about sex! #sex #survivor #respect #love #compassion #chroniclife #autoimmune #disability

  1. Awesome post. It is amazing that in this day age the doctors, specialists etc still can’t talk about sex with their patients. I remember asking a physio about sex and she just said “don’t do it”! When I was first diagnosed with RA, the arthritis foundation send me a booklet about sex for the disabled! Needless to say I was in tears after receiving that in the mail. But like you, I have been lucky enough to find an awesome man.


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