The “presumption” of ‘heterosexuality that prevails in our society also pervades in the literature regarding the link between sexuality and physical disabilities, including multiple sclerosis. It will therefore be very difficult for those of you who have a diagnosis of MS and are gay to find something written about the problems and sexual needs of gay men and women with disabilities. Thirty years ago it was literally impossible to find any information in this regard, and unfortunately, the situation is only slightly improved nowadays. In fact, although there is an extensive list of articles in literature relating to homosexual relationships, I found very little information on the relationship between disabled people and gays and lesbians in general, and nothing specifically about gay people with MS.
While routinely topics are shared, both in real life and online on various websites, about the experiences of men and women who have multiple sclerosis, there is little to read about those situations which a gay person with MS may encounter along the course of the disease. It is in fact “a minority within a minority” (Stewart, 1979), which seems to be so small that it is of no interest or very little interest to the community. For example, it may be very difficult for you to find health professionals who are knowledgeable about MS and able to treat the specific needs of gay patients, individually and in gay couples.
In Italy the various associations for MS seem to be extremely inexperienced and are not yet able to bring together gay people with MS in an extensive network of peers, similar to heterosexuals in the same situation. It is not clear whether the blame for this lack of information is the lack of interest that the subject raises and the fact that gay people with MS prefer to remain anonymous and do not themselves express the interest or the need to explore the ‘topic. However, in England and America, the situation seems to be better although it is often difficult to find immediate information.
In England there is the GLAMS society (Gay Men and Lesbians Affected by Multiple Sclerosis), the first institution in this regard (http://www.mssociety.org.uk/glams). GLAMS is a support group that operates on a national scale and aims only to help lesbian, gay, bisexual, and transgender (LGBT) people living with Multiple Sclerosis. This association facilitates contact between gay people in the same situation and offers concrete support to those who want to share personal experiences or are facing a feeling of social isolation. GLAMS offers its members a quarterly newsletter with updates on research in neurology globally, with particular emphasis on multiple sclerosis and the LGBT community. GLAMS also promotes social events where LGBT people with MS can meet and share experiences, doubts and fears. Currently, great interest is growing in the topic: just last month invitations were sent from the National MS Trust website to participate in specific psychosocial research on a national scale. This will be conducted on LGBT people living with multiple sclerosis at the De Montfort University in Leicester (http://www.mstrust.org.uk/research/gettinginvolved/clinicalstudies/lgbt-and-ms.jsp).
Additionally, in America an association was recently formed called the EDGE (Education for a Disabled, Gay Environment, New York). This is one of the few present organisations that deals specifically with gay people with various disabilities, including MS . A co-existence which has been identified in Canada since 1976, when the topic “Sexuality and Multiple Sclerosis” was addressed in the report ‘Sexuality and Multiple Sclerosis’ written by Michael Barrett, Ph.D., University of Toronto, Ontario.
In my article I asked a few questions in English and Italian to gay people living with MS that here I report with fictitious names, to maintain the privacy of the people interviewed.
Beth, 29, Dorset (UK) identified to her parents that she is a gay girl several years ago, just before she was diagnosed with MS. Her parents had a hard time accepting the idea that she is gay, but have been a great support in her daily life by minimizing the physical impact that MS was having on her work and social life. Her sexual experiences happened later than her peers, and just as she was beginning to fully explore her sexuality, the first symptoms of MS manifested. These included; loss of balance and numbness in the legs, followed by loss of sight in the right eye. She recently had trouble relaxing sexually in order to experience orgasm. I asked her to write a few lines to help me understand how she lives with the disease. Beth expresses concerns that the drugs affect her ability to feel selfless love; occasional muscle spasms also make her feel unattractive. There is a clear concern that her partners can feel that she is inadequate or that they may lose interest in her because of the disease. Beth, despite living in England and in a city where you do not often see sexual or racial discrimination, feels inadequate and self-criticises bitterly as if she is somehow responsible for having MS. Beth prefers to remain single: disappointment in love would be too hard to deal with.
Steve, 39, Leicester (UK) has had multiple sclerosis for 12 years now and has spent a lot of time looking for other young gay men who have multiple sclerosis. “I was alone, and I thought I’d never meet anyone,” Steve describes to me what he felt when he was first diagnosed with MS. “I was scared. I did not know what would happen to me.” In addition to the physical effects of the disease, which in fact can be debilitating, “there is a stigma within the gay community about anyone with any kind of disease, including cancer, AIDS or MS” says Steve. “You feel shunned. I’m gay as always, an ex-alcoholic, and at one point I was diagnosed with MS! I felt alone, psychologically destroyed, as if fate was playing a bad joke on me!” Steve says that through the MS Walk held annually in London (http://www.mssociety.org.uk / ms-events / ms-walk), he got to know other young people in the same situation and began to participate in other social events through which he found confidence and hope for the future. After the diagnosis his life in fact changed for the better, says Steve: “I have become more responsible, I started to seek information about the disease, I finally understood the importance of a healthy diet, I stopped smoking and drinking alcohol and also I started doing yoga.” Through reading and inquiring about his disease, Steve developed more confidence in himself and is now happy. In June, Steve met a man one a beautiful sunny day at a barbecue at his friends home, and he has just got back from a romantic break in Paris. “Multiple sclerosis is not the end,” says Steve. “My life before was just faster, now it is slower, but also more full. For people with MS, I want to say: to never give up!”.
Nora, 22, Cosenza (IT), however, has never seen sexual orientation as a problem or as something to be kept hidden. She is young and lives in Calabria, where it’s unfortunately known that in southern Italy nowadays most people have a closed-minded view of homosexuality. Nevertheless, Nora has never had trouble being seen outside with her partners, and in the role which they belong. She has never had any kind of problem from her peers, although sometimes someone has given her dirty looks. Despite this, Nora does not seem to care about the opinions of others, especially when it is regarding her right to exercise free will in her sexual choices.
Her family, however, is another story: Nora decided not to declare what her family feel and promises that the road ahead will be long before her parents understand her fully. As for multiple sclerosis, for Nora it all started a year ago, to be exact 11 months ago. The first 6 months have passed quickly between visits, analysis, ENP and in her case she is still under observation. For a few months she decided to take a break from the medical examinations of various kinds that were taking place, as she was often a victim of anxiety and panic attacks. Nora, like Beth, feels misunderstood, especially by the people closest to her. She expresses disappointment that she sees no one seems to give weight to her disease and what she is facing psychologically. She feels as though she has an invisible illness, like many others with MS and has stopped talking about herself to those who do not show understanding towards her.
In recent days she has started to see doctors again and is waiting to start treatment. Nora is stronger now and can not be conquered by negative emotions, her great passion is music and there is a girl in her life whom she is in love with. This helps to make her feel like everyone else. She is so happy to have found love in a wonderful person with which she can speak freely of the disease and everything else. “The heart cannot be controlled,” says Nora; if the body could give orders, it would give orders to the sclerosis, because it is that which can be scary. Love is not so harmful and is not scary.
Carla, 31, Milano (IT) is a girl who has spent many years of her life studying; She is completing a PhD in Experimental Biology and her dream is to move to Nottingham in England. She is a curious girl and full of life. Our virtual conversation started following her interest in moving to the UK before the end of her studies. She would like to continue her research and work in any pharmaceutical company. Carla has never known true love, but she knew she was a lesbian since she was a child. She had several problems at school with her friends and had to often hide her sexuality. She declared her homosexuality to her family at age 23 to the amazement of her mother, who already lost her dreams of a married daughter and some grandchildren, as if a lesbian could no longer do any of that, as though being gay meant you could never build a family. Her mother, Carla writes, has always showered her with many anxieties and the psychological pressure has always made her feel inadequate and wrong. Yet Milan is a modern city … At 28 she was given the diagnosis of multiple sclerosis following optic neuritis in her left, one morning at the end of a holiday. Carla feels she is inadequate and unable to live or love fully and openly, and she is convinced that multiple sclerosis poses another obstacle to her happiness.
Claudio, 26, Cagliari (IT) has lived in Madrid, Spain for one year where he works in a hotel as a receptionist. He has always been gay, he never tried to have any heterosexual relationships and never had any problems or shame from his family or peers. “No one asked me anything and no one had any doubts about my sexuality because it is obvious that I am gay,” says Claudio. In Madrid he does not have many gay friends and is not currently in a relationship. He was once engaged for a long time with a beautiful boy that he was his first and only true love. He still thinks of him and he believes that no one can ever replace him. The diagnosis of MS arrived last year following a series of episodes that were characterized by painful tremors and tingling in both sides of the body. His sex life was not in the least affected by the diagnosis although he prefers not to speak of MS to those who may be potential partners. Claudio appears to be a happy boy who occasionally struggles with courage and hope against MS. Despite this he lives openly with his sexuality.
These are the stories that I’ve gathered so far, but I’d like to continue developing the topic. If you want to share with me your stories, you can send me a private email or contact me on Facebook at my homepage. I recommend also reading the book of Yvonne Duffy (1981), “Everything is possible”, especially the chapter on the feelings and experiences of a group of lesbian women with physical disabilities.
Some of the experiences recounted by the women are extremely negative and mostly related to the refusal of the family of their sexual orientation or shyness with approaching potential partners because of concerns about their disability, while others describe feelings of adequacy, hope, satisfaction and a sense of strength and self-esteem that comes from intimate relationships and living openly.