Sexual dysfunction often accompanies MS and may significantly affect the intimate relationships and quality of life of people with MS and their partners.
Discussion of intimacy and sexuality is very important but can be difficult for both people with MS and healthcare professionals. Often they avoid bringing up the subject of sexuality. This may be due to personal discomfort, lack of professional training in the area, or a fear of being overly intrusive. On the other hand, intimacy and sexuality are difficult subjects for the person with MS as well. This may be because one is unaware that the problem could be related to the disease, embarrassment, fear of being judged or due to cultural barriers.
Below are key issues to bear in mind, in order to discuss this important topic effectively while minimising feelings of anxiety and embarrassment as much as possible.
FOR PEOPLE WITH MS
- An unsatisfactory intimate and sexual life does not have to be part of having MS.
- There are no rules for whose 'job' it is to discuss sexual problems, so talk to the healthcare professional with whom you feel most comfortable.
- You may be experiencing a problem for which there is a solution.
- Do not wait until you reach a crisis to discuss problems.
- Open communication with your partner is vital.
- Once the discussion has been initiated, write down questions between visits so as not to forget anything.
- Keep an updated list of medications to review during each visit, since a number of medications can negatively influence sexual functioning.
- Ask your healthcare provider for written material that you can read on your own and discuss later, if desired.
FOR HEALTHCARE PROFESSIONALS- Silence on the subject of sexual problems does not mean that they do not exist.
- Set the example of how intimacy and sexuality should be discussed: openly and without embarrassment.
- If you are not comfortable discussing this topic, it is important to seek assistance in order to feel more prepared.
- Make questions about intimacy and sexuality part of every interview since symptoms and problems may change. The individual may become more comfortable to discuss them over time.
- Often providing basic MS information that relates to sexuality can be helpful. For example: that sexual problems are common in MS, part of the disease symptoms, can occur together with urinary problems, etc.
- Obtain written material to offer to people with MS and their partners.
- Become familiar with the referral process for people with MS needing information on sexuality, even though it may not be part of your regular responsibilities.
| WHERE TO LOOK FOR ADVICE AND REFERRALS
• Health professionals
• Family planning centres
• Disability information advisors
• Community gay rights organizations
• Newsletters
for example ABLED! (Active Beautiful Loving Exquisite Disabled Woman). Quarterly newsletter. Focuses on body image, sexuality, family concerns, and other issues relevant to women living with disabilities. To subscribe, send a donation ($10.00/year suggested) to ABLED Publications, 12211 Fondren, Suite 703, Houston, TX 77035. Tel: 713-726-1132. Fax: 713-726- 8006. Web site: http://abledwomen.org.
• Books
Sexuality and Multiple Sclerosis by Michael Barrett. MS Society of Canada, 1991 (available in different languages).
Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities by Ken Kroll and Erica Levy Klein, No Limits Communications, 2001.
The Joy of Solo Sex by Dr Harold Litten, Factor Press, Paperback, 1996.
Sex for One: The Joy of Self Loving by Betty Dodson, Three Rivers Press, 1996.
• Research help
Sexuality Information and Education Council of the United States (SIECUS) provides a bibliography of print and audiovisual materials related to sexuality and disability for $3.00 Write: SIECUS, 130 West 42nd Street, Suite 350, New York, NY 10036. Tel: 212-819-9770. The bibliography is also available free on the Web at www.siecus.org.
• Journals
Sexuality and Disability is a journal that publishes scholarly articles on rehabilitation, disability, and sexuality. It also publishes guidelines for professional clinical practice, case studies, and information for consumers. Kluwer Academic/Human Sciences Press, Inc., 233 Spring Street, New York, N.Y. 10013-1578 USA. www.kluweronline.com
• Catalogues
A number of discreet catalogue services are available that sell sexually oriented materials and promise anonymity. Their products may be helpful to both disabled and non-disabled people. Some include: Special Edition Catalog for Disabled People. A catalogue of sexual aids, books, resources, and information. $4.00 each. Xandria Collection, P.O. Box 31039, San Francisco, CA 94131. Tel: 800- 242-2823. www.xandria.com
Good Vibrations provides a mail-order and Internet catalogue of sexual aids, books and videos. Good Vibrations, 938 Howard Street, Suite 101, San Francisco, CA 94103. Tel: 800- 289-8423. www.goodvibes.com
• Websites
The Sexual Health Network's web page has information on sexuality for those with disabilities and illnesses. It also provides links to other resources and offers live broadcasts. It has an archive of mainly educational books and videos www.sexualhealth.com
The Ann Summers web page has a catalogue of adult sex aids, books and videos www.annsummers.com
The youtopia web page has a catalogue of adult sex aids, books, DVDs, clothing and accessories www.youtopia.ltd.uk
The Sinclair Intimacy Institute has a catalogue of adult sex education videos and DVDs www.intimacyinstitute.com
• Other resources
The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 is a 19-item self-report instrument that measures primary, secondary, and tertiary sexual dysfunction in MS. It is used to assess these aspects of sexuality, and can be utilized to educate healthcare providers about which aspects of sexuality require attention. Many MS societies have advisors, toll-free lines, publications and groups for specific sexual orientations (for example GLAMS in the UK and LeHoMS in Norway).
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