SEVERE ME AND INTIMACY

How can someone who cannot bear touch, has no physical energy to engage in continued sexual intimacy, who feels ill all the time, manage to remain intimately connected to their partner?
This is the question facing every couple. ME can have a devastating impact upon relationships; when ME
or Fibromyalgia enters a marriage, one casualty can be intimacy between the partners.
The sexual act, as a negative experience, has been shown to correlate with the intensity of symptoms in women with ME. (Blazquez et al 2008)
Pain, reduced energy, reduced interest, health problems of the
partner and increased responsibilities for the healthy spouse can all affect a couple's sex life. 
(Allen 2008 )
Sex may be a too high-energy activity for someone with ME.
Another cause of trepidation or anxiety for the partner with ME
can be a diminished or non-existent libido. A very difficult issue is that if your body, your muscles, hurt all over, so you cannot bear even being touched, then sex will hurt. ( Rockycha 2007)
One woman describes how: "There are times when the air
on my skin hurts, it’s not just a disease of pain, it's a disease
of hypersensitivity." (ABC News 2008)
Doctors call this allodynia. It means that the brain interprets
neutral or pleasant stimuli, like gentle touch or running water from a tap, as pain. People with ME also commonly experience hyperalgesia, which is an extreme reaction to painful stimuli.
A partner stresses how, "You really have to focus on the
non-physical aspects of love when you're in a relationship with a person in chronic pain, you have to concentrate on the mental and spiritual bond in order to carry you through times she has a flare [the worst period of pain]."(ABC News 2008)
In a relationship intimacy remains important, whether or not the full sexual act can be attained.
It is important to remember that love can be conveyed in a wide variety of gestures and affectionate interaction. These are important to maintain whenever possible, so that people do not become isolated in their relationship from each other, despite the physical difficulties of their situation.
Shaw (2001) advises: “Just because you have M.E. does not
mean that you have to give up sex, but you may have to
adapt…. Sex does not have to result in full intercourse; there
are other ways of providing pleasure for each other.”
It is easy to feel hurt and rejected, living with someone with
ME; communication and openness are essential, yet are
complicated by the complex interaction of severe symptoms,
making it even harder to communicate at all, let alone deal
with intimate difficulties.
Men seem to find it particularly difficult to air their feelings to
themselves or their partners. I can testify from my own experience, as a husband, how difficult it can be to express one’s emotions.
We have learned to live with Severe ME by focusing on the
strength of our relationship and the love, blessed in marriage, that holds us together and keeps us growing and looking for answers.
It is not easy in the face of such a profoundly complex illness,
but love is greater still.
We simply refuse to allow the ME be our whole world, even
though it pervades every aspect of our existence!
References :
ABC News (2008) Chronic Pain and Sex: a Couple's
Gentle Battle With Fibromyalgia
http://abcnews.go.com/Health/PainManagement/Story?id
=4841319&page=1#.TsYZUj2ImU8
Allen PR (2008) Chronic fatigue syndrome: implications
for women and their health care providers during the
childbearing years. J Midwifery Womens Health. 2008
Jul-Aug;53(4):289-301; quiz 399.
Blazquez, A., Alegre, J and Ruiz, E. Women with chronic fatigue syndrome and sexual dysfunction: past, present, and future. Journal of Sex & Marital Therapy, 2009, 35, 5, 347-359.
https://www.ncbi.nlm.nih.gov/pubmed/20183003
Rockycha (2007) Sex and Chronic Fatigue Syndrome
http://www.zimbio.com/Fibromyalgia/articles/13/Sex+C
hronic+Fatigue+Syndrome
Shaw J (2001) Relationships and ME
www.mesupport.co.uk/index.php?page=relationships-m-e
(Adapted from : "Severe ME, featuring justice for Karina Hansen"http://www.stonebird.co.uk/severemebook/severeme.html_)

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