The subject of sexuality might make some people uncomfortable yet it is a subject that is important to us all. For the bleeding disorders community, it is something that must be talked about in an open and straight forward manner. For many people though this is easier said than done.
At the WFH 2014 World Congress, the subject of sexuality and bleeding disorders was open for discussion during several sessions and poster presentations. Ed Kuebler and Declan Noone spoke during their session titled, Sexuality and Risk Reduction, Greig Blamey and Alfonso Iorio presented their free paper on Investigating attitudes and practices of Canadian physiotherapists on sexual health: A comparison to the HERO dataset; an entire session was devoted to the subject of Embracing Women’s Sexuality with Claire McLintock, Jill Smith, Lisa Thomas all speaking on a variety of topics around women and sex, and several posters were displayed. (Addressing the sexual wellbeing needs of adolescents with hemophilia; Sex life and self-esteem in adults with hemophilia; and Love, sexuality and communication in hemophilia: A psychosocial and patient perspective book developed for adolescents, adults, and carriers.) These presentations and discussions were an important step in addressing a relevant issue for everyone in the bleeding disorders community.
For psychologist Frederica Cassis, WFH psychosocial committee member and long-time WFH contributor, sexuality is not only about the act of sex, it is about well-being, whether you are single or in a relationship, celibate or sexually active, a parent or without children. To be desired, cherished and loved is universal to the human experience and these feelings are no different for the young and not so young living with bleeding disorders. For Cassis it is vital to begin having this discussion with young people with bleeding disorders as soon as possible to remove the stigma attached to sex, because not talking about it with young people can lead to a whole host of issues for the one with the bleeding disorder and for their partners.
One of the most common feelings expressed by people with bleeding disorders when it comes to sexual intimacy is insecurity; insecurity about one’s physical appearance, insecurity about bleeds, and a general insecurity about the act of sex. This rings true in both men and women with bleeding disorders. Issues that can also affect wellbeing are brought about by limitations in movement due to fatigue, chronic pain, side effects from medications, as well as a lack of confidence in their appearance due to joint damage and the potential for a painful bleed. These may lead to a lack of desire and depression. These are things that go through the mind of every single person with bleeding disorders at some point in their lives but the hope is that through open discussion and education, the insecurities can (slowly) be cleared away.
These concerns people have are real and they need to be addressed so people have the tools to face their problems. Ignorance breeds fear, and not having proper information and counselling can lead people to feel isolated and alone. Psychologists like Cassis suggest that people with bleeding disorders should talk to a professional as early aspossible to obtain information but also learn communication skills that would help improve the quality of relationships.
“Being able to mention these issues and others in a setting, either through counselling, with a parent, or with a doctor, can be very helpful because the person could learn to cope with these difficulties,” said Cassis. “A lot of people’s concerns are about how to communicate these issues related to health to a partner and still give off a positive self-image to others.”
The goal of having sessions and discussions like those at the recent Congress in Melbourne is to open up the discussion and break the stigma, starting with those on the front lines of care having the right information who in turn pass it down to the patient in all corners of the globe.
“It is not about telling people how to have sex, but about giving the most useful information to someone with a specific issue, so he/she can have the right mindset (and information) to fully enjoy the heat of the moment,” said Cassis.
The good news for the community, as the data shows from the HERO (Haemophilia Experiences, Results and Opportunities) study, people with hemophilia in sexual relationships have an overall high rating of satisfaction in their sex lives and that with a little knowledge they don’t have to feel like they are not normal.
from 675 PWH who answered in the HERO quantitative study;
384 PWH were in relationships;
of these, 324 (85%) answered questions regarding sexuality and intimacy;
78% (236 of 303) responded they were extremely/moderately satisfied with the overall quality of their sex life.
Frederica Cassis, Irene Fuchs and Edward Kuebler have worked together to produce a booklet on the subject of sexuality and hemophilia that is currently only available in Spanish. English and Portuguese editions will soon be available. The booklet’s name is Amor, Sexo y Comunicación en hemofilia or Love, Sexuality and Communication in hemophilia.