For someone diagnosed in their twenties, thirties or even forties – life is permanently interrupted with a need to realise that things can never return to where they were before. This affects not only career and earning power but – more importantly – relationships, perhaps getting married and having a family. PD is many things, but ‘sexy’ ain’t one of them… explains Sarah Collings.
It means becoming medication compliant on a daily basis. It means a change of identity – not only in the eyes of people around you but in your own sense of self. For single women, it may mean the end of their ability to find a partner easily, concerned that their ‘condition’ may frighten some people off.
A degenerative brain disease might be many things, but sexy is not usually one of them.
For many women hormonal fluctuations once a month with their periods can create havoc with medication, causing increased PD symptoms and exacerbating menstrual problems with mood swings and heavier flow. Bad enough living with constipation and urinary urgency, adding another ‘downstairs’ problem can feel really unfair.
Sex can also become more difficult; some women have problems becoming aroused. This can cause partner penetration to hurt – creating a vicious cycle. Many of these issues can be resolved, to some extent if not fully, but who to ask?
Health professionals can still be very loath to discuss this topic, many GPs and neurologists find it hard to talk freely about sex, contraception, lubrication, orgasm… And if they don’t ask it may seem to a female patient that she doesn’t have permission to introduce any issue about her sexual and reproductive systems and expect a welcoming response.
In addition, if a woman isn’t heterosexual, or is from a cultural background where freely discussing sexual matters is most definitely not the norm, this can lead to even more reluctance to discuss female intimacy issues – particularly if a said health professional is male.
Referring on to a psychosexual therapist usually entails a waiting list if through the NHS or else having to pay. Women already generally earn less than men, and PD can curtail this even more if there are adverse circumstances. If the symptoms of PD becoming intrusive, some may change to a less stressful job that doesn’t pay as well as the one held pre-diagnosis.
PD mimics many of the symptoms generally associated with old age, such as increasing poor mobility and balance, and can equally impact sexually. For men there may be difficulties in gaining and maintaining erections, while post-menopausal women often experience vaginal atrophy, or shrinking of the vaginal tissue, as well as problems with arousal and lack of ensuing natural lubrication.
Knowing that the majority of PD patients are already in this biological stage of sexuality, it is often assumed that people with PD are not sexually active. This sexless image is reaching down through the generations and very adversely affecting women who have a YOPD diagnosis.
The needs of all YOPD need recognising. These people have much to contribute and should be seen as active members of society – with the recognition of having a condition that can be extremely challenging to live with.
There is a need for more awareness of YOPD among women and how the condition and associated medication may impact on female hormones. Oestrogen and Dopamine are two very happy bedfellows – see further reading panel at the end. As ever, knowledge and understanding are key.
We believe it should be easier to access gynecological information. As one of the bigger gaps in the PD story – this is something we hope to progress.
People, especially women, with disabilities historically have found it hard to be accepted as fully functioning sexual and relational beings. Hopefully not on our watch.
According to the World Health Organisation’s current working definition, sexual health is:
“…a state of physical, emotional, mental and social wellbeing in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.” (WHO, 2006a)
