Would you be concerned about your sexuality if you were told that you didn't have long to live? If breathing was hard. If going to the bathroom was a struggle? What if your connection to your own eroticism, or orgasm was something that you always had - but the disease that was stealing your life was now taking that too? Would you care? What if you believe that sexuality is potentiality. That somewhere deep inside you, there was this unspoken knowledge that our sexuality is the most alive thing in you.
What if you believed that your arousal was not just pleasure but also life force energy. What would you do? I am working with such a woman right now. Chronically ill, dying and not willing to give up her relationship with her own sexuality.
She has reminded me that we live in a world where we don't speak openly about sex or death. And perhaps never of sexuality as a part of the dying process.
In looking at the literature and studies on sexuality and the dying this is what I found:
The results of important study examined sexuality and terminally ill patients where one third of couples reported that they continued to have intercourse up until a few weeks before the death of the patient (Sankar1999, 207). According to this author, the need for couples to continue to their sexual relationship should be “respected by other".
This study suggests that sexuality is an important aspect to the terminally ill patient's self esteem, self care, and an essential part of their humanness. For many this idea of remaining whole including our own sense of sexuality and having sexual contact with themselves or with a partner is worth recognizing.
Even with changing bodies through possible surgeries, the effects of drugs, and the ravages of illness - people want to hold onto their erotic selves. Further reading turned this up in the literature. (Koff 1999, 38) This author writes that it's important to “let your loved one know that it's still alright to cuddle under the covers and to enjoy each other’sbodies”.
Once again we hear a discussion of the importance of sexual contact for the terminally ill patient and partner. Koff goes onto offer ideas and suggestions for the patient who notices a “marked change in libido, sexual response or functioning”. Koff suggests that the patient should check with a “medical professional” and provides that “illness, treatment and medication can have a direct effect on these responses” (p.38). Koff also offers that it's important for the terminally ill patient to “find someone you feel comfortable discussing personal matters with and do not assume you have toset your sex life aside” (p.38).
The fact is that a patient's primary doctor may not be the perfect person to discuss their questions about sexuality. It's possible that the patient, their family and even caregivers may be better served by working with clinical sexologists or sex coaches who have a special interest, or are specifically trained to provide services for this population. It has been written before that “all of us are sexual beings.
Our sexuality is an integral part ofus, it is there before birth and until our death.” (Wells 2000, 15). So if death, dying and sexuality is an integral part of life why would we ignore sexuality in the dying or chronically ill? Perhaps in the future we will be reading more about holistic hospice care where a patient's sexuality is given space and support.
It's well past time to focus more attention on supporting the dying or chonically ill to hold onto and nurture their intimate relationships and sexual nature: both with themselves and with their partners.
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