2 posts tagged “Open community”

“Not tonight”: How health conditions can affect your sex life + relationships

Posted August 21st, 2018 by

Personal (but important) question: How’s your sex life? Explore how your diagnosis (and symptoms and treatments) can impact your romantic relationships, see what members are saying about the topic on PatientsLikeMe — and learn what you can possibly do about love-life struggles.

Intimacy, interrupted

According to sexologists, people with a variety of health conditions can have some common issues with intimacy, such as:

  • Loss of interest in sex following a life-changing diagnosis
  • Physical and emotional stress and fatigue that zaps energy and self-confidence for sexual activity (or dating and romance, in general)
  • Disruptions related to physical symptoms and treatment side effects. Just to name a few examples: Parkinson’s disease can cause rigidity and tremors, digestive and neurological disorders can bring bowel incontinence, and chemotherapy for cancer can bring nausea and weakness.
  • Some side effects (whether mental or physical) can be even more sex-related, such as vaginal dryness, erectile dysfunction, issues with orgasm and low libido. (join PatientsLikeMe to read more about the sexual side effects of anti-depressants here in our forums).

Sex therapists say that people often push intimacy issues aside after their initial diagnosis because they may have seemingly bigger fish to fry. But sexuality doesn’t end when illness strikes, and research has uncovered the many mental and physical benefits of sex — so it’s an important topic.

Ignoring intimacy issues can have a snowball effect, Newsweek reported in an article about cancer and sex. “A lot of folks think it will get better over time, and it doesn’t, or years go by, and they’ve lost intimacy in their life,” says Catherine Alfano, vice president of survivorship at the American Cancer Society and a rehabilitation psychologist. “Sexuality is a very understudied area for the same reason it’s an undiscussed area in clinical practice: People just don’t want to talk about it—not in their research, not as a patient, not as a provider.”

So what can you do? Talk about it

Include intimacy issues on your “must-discuss” list when you see your healthcare provider. Could any adjustments help improve your sex life? For example, ask about different medications or dosages, tweaking your medication schedule to avoid sex-related side effects some days, and any tips that could make sex feel better (such as using pillows for body positioning or lubricants for dryness issues). Showering before sex may help loosen your muscles and clear your mind for the main event.

Also, talk with your partner about how your condition has affected your romantic life and what you can do together to improve your intimacy. That may mean more foreplay and less intercourse, or making a conscious effort at hand-holding, cuddling, dancing, date nights and other activities that can help bring back some closeness.

Consider seeing a counselor or therapist (solo or with your partner) to talk about the changes and challenges you’re experiencing, and get advice on treating related mental health or self-image issues and affirming your relationship.

On PatientsLikeMe

Nearly 35,000 members with a wide variety of conditions say they’re interested in the topic of relationships. What kinds of conversations is the community having about sex? People are sharing about everything from mental health conditions affecting their sex life to self-image issues when they’re dealing with lots of physical symptoms.

How is your condition impacting your sex life and romantic relationships? Join our community and this forum discussion to help make this important issue less taboo.

Share this post on Twitter and help spread the word.


Sharing, Openness…and Privacy?

Posted November 18th, 2009 by

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business.

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This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.

So, what has changed about our Privacy Policy?  Well, the short answer is not much – but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

For example, over the last year we have expanded our efforts into understanding drug safety in the real world.  This started with the Treatment Evaluations – letting you tell us (and our customers) what is good and what is bad about the treatments you are taking.  Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe.  Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community.  All of these initiatives are building to a better understanding of how treatments work in the real world – one of our goals here at PatientsLikeMe.

As we’ve said through our site from the start – you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.”  This is common sense on any website, but for new members we wanted to make it clearer.   The bottom line – the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.

If you haven’t see our Read This! section, please do.  It’ll help give you a sense of what we believe the risks and benefits are to sharing information.  Openness is at the core of who we are as a company (see our Openness Philosophy).  Your openness is improving patients’ lives, accelerating research and helping improve medical care.   Thank you for that.  If you have any questions or comments, you know where to find us!

PatientsLikeMe member bheywood