Chronic and degenerative diseases such as Parkinson’s, Alzheimer’s, diabetes, lupus, and fibromyalgia, among many others, may dramatically alter the patient’s way of life in order to compensate for their symptoms. Said diseases may cause significant changes in their daily habits, and even make him or her shy away from the things he or she used to enjoy thoroughly, including favorite foods and activities, and even the intimacy with spouses or loved ones may suffer on account of the disease’s symptoms. With this in mind, Tuppy Owens, a renowned sex therapist, hosted a free online lecture about keeping a healthy sex life in the midst of a chronic disease, while also elaborating on certain activities that both patients and their caregivers can partake in order to enjoy this facet of their lives.
A chronic disease can, in many ways, destroy a person’s life, both literally and figuratively. Those who suffer from any of these conditions might find themselves disliking the activities they used to enjoy greatly in better days, and the symptoms might keep them bedridden for long periods of time, adding an additional burden for those that care for them. Spouses and sentimental partners of afflicted people, on the other hand, might lose perspective at times and will become unable to understand the changes through which their significant others are going through on account of the disease. These rifts in their relationship may begin as very small and insignificant when the disease is initially diagnosed. However, as the condition progresses and the symptoms become more frequent and intense, the relationship might become more and more strained, until eventually reaching its breaking point. Young couples, in particular, are more likely to fail when one of them is diagnosed with a chronic illness, as opposed to those who have been together for long periods of time. Furthermore, the partners who also act as caregivers for their afflicted significant others are also 6 times more likely to develop psychological disorders such as depression.
The feelings of entrapment and helplessness play an important role in the estrangement of the relationship. On one hand, the afflicted person can’t take care of themselves, and the dependency on others to perform even the most basic tasks will create in them feelings of helplessness and guilt for being a burden on others. On the other hand, spouses doubling up as caregivers might initially feel frustrated when their spouses’ condition is not getting any better, a feeling which is quickly replaced by depression, and the sensation of being trapped with nowhere to go.
About the event
It takes a lot of effort from both parties to keep the spirits high and offset the pain and psychological duress that stems from a chronic illness. Luckily Owens’ lecture was meant to shed light on these matters, while also addressing information on how to keep an active sex life, despite the patient’s illness. Registration was free for the event, and Owens discussed, among other things, topics such as self-acceptance, dealing with physical dysfunction, and about how to keep active despite limited physical capability or the excessive fatigue common in diseases like fibromyalgia or lupus. Furthermore, the lecture also taught how to create an intimacy that goes beyond sexual pleasure.
Despite the vast amount of medical knowledge we may have on certain diseases, one of the biggest areas of the patient’s life that modern medicine still manages to overlook is intimacy. According to a 2005 study performed by Elaine Steinke of Wichita State University’s School of Nursing, those who suffer from chronic diseases such as cardiovascular illnesses have an elevated concern about how their condition will affect their sex lives, considering that the added strain may lead to negative consequences in the long run. Similarly, those who suffer from lung conditions also perceive that they won’t be able to enjoy sexual activities due to breathing difficulties. The study goes on to state that, in most cases, self-management strategies are paramount to address the intimacy needs and concerns of said individuals.
Another survey conducted by GeneFo, the organizers of the lecture, studied the factors which caused the most stress in male sufferers of Parkinson’s disease. The results suggested that the vast majority of participants — about 54 to 79 percent of the population — considered erectile dysfunction to be the worst symptoms of the disease. Women share similar results, as incontinence, loss of lubrication, vaginal tightness, and inhibition towards the sexual act were also the main concerns of the female population who participated in the study.
Spouses or significant others that also double up as caregivers also have their own set of concerns about their partner’s disease, especially regarding their feelings of guilt for wanting to engage in sexual activities with a person that may not be able to at the moment, or at all for that matter. Other sources of guilt may also stem from the fact that they might not find their partners sexually attractive anymore on account of their condition, a factor which is more common in younger couples. Owen’s lecture also provided important information on the activities caregivers can perform, with their partners or by themselves, to manage the emotional rollercoaster that is caring for a person with a chronic disease and to satisfy their sexual cravings and the need for intimacy.
When it comes to chronic diseases that also leave their mark on the patient’s sex life, Dr. Owens has always remained on the forefront, providing information and solutions to those who might think that their life has permanently changed for the worse on account of their condition. Through her efforts, many individuals have managed to live healthier, happier lives, while also rediscovering intimacy in ways they thought wasn’t possible in the past.
Who are the organizers?
The organizer of the event, GeneFo, is an online community for patients that suffer from Parkinson’s disease. The community is meant to bring together people with this condition and to provide information about the disease, such as several expert educational resources and clinical trials. Tuppy Owen’s initiative originated due to a survey in the website in which the vast majority of patients voted “sex” as the topic they felt that they need to talk about the most, but were too embarrassed to consult with their physician.