International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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illness & sexuality

Discussion in 'Lifestyle Management' started by koco, Aug 12, 2016.

  1. koco


    I've been struggling with sexuality issues in my marriage as a result of myriad illnesses and up til now, the only two people I've talked to about this is my husband and one therapist who helped me a bit, but with whom progress seemed to have plateaued. Last night, I was meditating before bed and it occurred to me that I have this community of people who may understand my struggles better than anyone else in my life.

    Here's some background. I've been married for just over a year. My relationship with my husband is solid. Our sex life is an ongoing struggle, though. I am 41 years old. My husband married me knowing that I am recovering (massively improved) from PTSD, some of which is related to sexual abuse, that I am diagnosed with fibromyalgia, chronic fatigue immune deficiency syndrome, natural killer cell deficiency, hypothyroid and orthostatic intolerance. My husband is a recovering alcoholic who has found healing via spirituality and who continues to grow and mature emotionally. The fact that he and I are both committed to growing spiritually is the basis of our relationship. He encourages me to take better care of myself by surrendering to how I feel, resting when I need to rest, and continuing to let go of fear of these diseases.

    My sex drive is kaput whereas my husband has a very healthy sex drive. We have had numerous conversations about how to reckon with this. I see my issue as two-fold where part derives from fear as the result of trauma and the other from the symptoms of my battery of illness.

    As for emotional trauma, I sought the help of a sex therapist. One of the important breakthroughs we had was her validating that for most of my young life (say, age 14 - mid-thirties) I was in the grip of a genuine sex and love addiction. I didn't know that was such a thing. I suffered immensely from that addiction. (If you know what I'm talking about, I need say no more about it. If you're not familiar with sex addiction or sex and love addiction, it's real and it's terrible.) The proponents of Anonymous groups expound that one will not find relief from addiction unless one surrenders to a spiritual path. I agree. The twelve-step program is one of many spiritual paths. I connected with my husband and was able to grow a healthy relationship with him only after I was well on my way to recovery from this addiction. The bizarre aftermath is that instead of suffering from an unrelenting and excruciating desire for validation through sex and "love", I now find myself in a truly loving relationship with a crappy sex drive. My addictive pattern still manifests in dreams where I feel that pain of desire intensely and act out with fictional men. This is something else I am learning to surrender to and little by little, I see myself in my dreams being guided by a more mature and fully present presence. I want to continue to learn how to experience sexual desire in the context of a healthy relationship. I am somewhat baffled by this because desire seems to imply lack and the object of desire seems to enforce its objectivity. Any thoughts on this part?

    The second fold: I regularly feel so unwell that it never occurs to me to initiate sex with my husband. My skin feels like it's being electrocuted, every cell in my body hurts, I'm so tired, I sometimes weep at the thought of performing everyday tasks. No one understands this unless they've experienced it for themselves and I don't wish this on anyone who hasn't.

    I've requested that he initiate sex verbally by asking. This way I am able to make a decision. Else, if he's trying to initiate via some sort of foreplay, I sometimes don't get it because I'm often confused or lost or repelled concerning physical cues for all the reasons mentions. I've only ever said no if I'm having a heavy or painful menstruation. It probably doesn't sound so romantic, but it helps clear up communication because otherwise, if I'm too dense to understand what he wants, I risk injuring his masculinity.

    I feel like sexually, I'm a huge disappointment to my husband. I'm aware that I fulfill him in every other way and we love each other so much. He tells me that sex is just icing on the cake, but really, how good is a cake without icing? When we occasionally discuss this issue, we do come to an understanding and he does understand that I am working on my own healing. I just feel so stuck and when it does come up, I feel like nothing else I've accomplished matters and I just want the earth to swallow me whole and forget about me forever.

    Even if you have no advice, I'd like to hear from you. If you're in more pain than I am, I love you and am here for you.

  2. hellytheelephant

    hellytheelephant Senior Member

    S W England
    Hi @Koko

    Mr Helliphant and I had been married only 6 months when I got sick...and he was already sick- so I know what you are going through. 3 years on and we are still grieving the losses, but we are solid and learning to roll with the punches. Years 2 and 3 have been better than year 1 if that helps at all! Maybe such difficult circumstances force you to value each other more...and I have learned to stop comparing myself to 'what other couples maybe doing.' and I often thank God that what we are dealing with is less than some people have. My attitude started to change when I heard a radio prog about young people with disabilities and a young guy in a wheelchair ( he had been in a car accident )was asked if his sex life had changed...he said yes he was more limited but that he felt lucky to have any sex life at all.

    I can relate to many parts of your story...but firstly I wanted to say- thank you for being so honest. In my opinion there is too little written about chronic illness and sex...and we are not asexual just because we are ill! Secondly you have met ( what sounds like) a great guy and you have healed enough to build a relationship and marriage that is 'solid'- that didn't just 'happen' you are 50% of that, and he has chosen you to be his mate on his life voyage.

    You can talk to each other honestly- which is plenty more than many people ever have. I am in a slightly different situation as my husband is also chronically ill. In the past years ago I was in a relationship where he was fully fit and I was very poorly. Neither are easy!!!

    I get that you want your husband to always be the one to initiate, but is that the best way? If he is often 'often up for it' and you are rarely..then maybe initiation could come from you ( it is also very difficult for any guy who is putting himself up for constant rejection) You are the best person to know your best times of day, and can take pain relief, put the heating on, or whatever you need to feel as comfortable as possible. I am not belittling how crap you feel- both me and Mr h are in almost constant pain.

    As to loss of libido in your case: As you are in your 40's it is possible that your hormone levels are dropping ( google perimenopause.) I know these words don't solve the problem- if I could do that I would be a billionaire - but you are not alone ...
    ...and cake without icing can be pretty great...and it is even better when you look forward to icing and you really enjoy the times the cake is iced!!
  3. koco


    Thanks so much for taking the time to respond to my thread, @hellytheelephant. I appreciate your reminder to me that I have contributed to my own success in my relationship - your words bring tears to my eyes.

    Thank you also for the vote of confidence concerning my initiating sex. This is something that weighs on me and I'd like to be more comfortable doing this. Your advice is good - I've been in the habit of recording incidences of symptoms for my and my doctor's knowledge, but do not record periods of wellness. How about that for the "glass is half empty"! I will keep track of when I feel well for the reason you suggest and also this is a more optimistic perspective to cultivate. Very cool.

    Indeed - hormones are a piece of the puzzle, as well as neurotransmitters. I was tested and am very low on several neurotransmitters that relate to, amoung other unpleasantries, low libido. Many of my hormones are also low. I found a new gyn just a few months ago who has me on bioidentical progesterone pre-menstruation and estradiol during. This has helped dramatically with PMS and painful period. My body is still adjusting to this regimen and I hope that given some time it will allow me to feel better more regularly.

    I wish you and Mr. H much love and support. Thanks again!
  4. cfs6691


    You and your husband care about each other and about your relationship so hopefully you can work out everything.The main thing is that you care and that you found each other.
    L'engle and zzz like this.

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