Sex-ing World MS Day

Today, May 27, 2009, is the first ever World Multiple Sclerosis Day, a day dedicated to uniting MS organizations and individuals world wide in the name of mobilizing a truly global movement to end MS.

As someone who has MS and is also a sexuality educator, my contribution to a new global movement for MS awareness is to work with NSRC to provide the best (U.S. based) resources I know of to support the (sexual) lives of people with MS and those who are intimately involved with us.

Far too often in the U.S. and elsewhere, sex is either avoided altogether or approached in an overly medicalized way for people living with MS. Within the fields of sexuality research and education, disability and chronic conditions have often been left out but that is beginning to change as you will see from the resources listed below.

Organizations, researchers and pharmaceutical companies have tended to focus on “sexual dysfunction” and its treatment to the detriment of talking about what beauty and function actually means for individual bodies and how pleasure has been proven to have a positive impact on MS symptoms.

As the World MS Day web site says, “Multiple sclerosis (MS) is a chronic, often disabling disease that is the result of damage to myelin- the protective sheath surrounding nerve fibers of the central nervous system (brain, spinal cord and optic nerves). When myelin is damaged it interferes with messages between the brain and other parts of the body.” MS symptoms can and do include severe fatigue, depression, blurry vision/blindness, paralysis, pain, tremor and cognitive issues among many others.

Most people who are diagnosed with MS are women between the ages of 20-40, some of our most sexually active years in life and the years when many women are planning to have children. Just imagine for a moment being a 25 year old woman with MS who sometimes but not always has to live in a care facility (due to having the relapsing and remitting form of MS). Our society actively promotes lies such as the sexual/intimate/relational invisibility of people with disabilities and tragically... this often causes women with MS and others to adopt these scripts of sexual invisibility, silence, fear, shame and the like. The good news is that many are also finding their own ways to sexual happiness, health and rights in spite of society's scripts.

There is a saying amongst many of us who have MS, “damn right I’m good in bed, I can sleep all day” and although we laugh about it, sadly, it isn’t really very far from the actual truth. 

Obviously all of these symptoms provide us with challenges—but perhaps the biggest challenge of all is having the courage and then resources available to create our own individual sexual script—not based on what society or culture or medicine demands of us.

In the past several years of working on disability and sexuality issues for NSRC, I have had the opportunity to work with some of the leading global experts working in these areas and if there is one take away it is this: once the world begins to realize what we as people with disabilities define as sexuality and intimacy it will begin to revolutionize how all people think of sexual pleasure, beauty, bodies, function/dysfunction and the notion of ability itself. Our collective level of sexual creativity will be unprecedented. 

Now isn't that a goal worthy of working toward?

World MS Day presents us with an opportunity to begin an annual global dialogue about what it means to live with MS and continue to maintain a healthy sex life beyond diagnosis and disability (or as I would argue, even improve upon it)—however we care to define sexual/intimate happiness for ourselves.

Our intention from NSRC is to assist participating MS organizations with including a healthy, positive approach to sexuality in all aspects of World MS Day in the future.

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Here are some of the most credible U.S. based resources that can help provide people with MS, our loved ones, caretakers, researchers, medical doctors and policy advocates with quality data as well as new possible ways of thinking about sex and MS:

SexualHealth.com (comprehensive information and Q & A option with leading national experts on MS and sexuality, Dr. Annette Owens, Dr. Russell Shuttleworth (an expert on men, sex and MS) and Dr. Mitch Tepper)

Center of Excellence in Sexual Health: Disability and Sexual Health Program (for leaders in the areas of education, research, policy, religion, media, advocacy)

Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illnesses/ Kaufman, Silverberg, Odette (one of the best, recently updated and most engaging books available on the subject)

About.com (sexuality and disability myths and facts)

National Multiple Sclerosis Society (excellent resources on intimacy in relationships; new challenges/dysfunctions; pregnancy and parenting; the single best national web site for research and up to date information on MS)

Sins Invalid (innovative, stunningly beautiful performances and workshops on intersections of sexuality, disability, and the body—led by performers with disabilities from all over the nation)

National Gay and Lesbian Task Force (the Task Force has a Disability, Access and Oppression Collective which advises on integration of disability rights into all areas of their work, a model many organizations could learn from) 

National Sexual Violence Resource Center (national resources; conferences; research regarding the mostly little known, extremely high rate of sexual assault on people with disabilities)

Marriage Equality USA (for lesbian, gay, bisexual and transgender people with M.S. and/or their partners because there are many legal and health ramifications of marrying, not marrying and not having the access to marriage when wanted and needed). 

American Association of Sexuality Educators, Counselors and Therapists (to locate a nationally credentialed sexuality educator, counselor or therapist in your region; conferences; books; resources)