3 posts tagged “trust relationships”

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

Posted 11 months ago 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.

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Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

Posted March 21st, 2018 by

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Here’s their take on dating and relationships.

From Karl’s perspective…

Imagine dating in the early dawn of the internet along with a diagnosis of a neurological disorder. As if I didn’t have enough obstacles in my life, now I had to explain to my dates that I had early-onset Parkinson’s disease. Now, I came with a “warning label.” The challenges of dating, connecting, and finding someone who could look beyond my illness would take a miracle — or so I thought.

Admittedly, in my late 20s and showing signs of Parkinson’s disease (mild shaking, involuntary movement, stiffness, gait issues, and mild speech impairment), I didn’t see myself as a gem, but I still felt that I could be a loving and compatible mate. I knew that finding a partner willing to love and marry someone diagnosed with a supposed progressive, degenerative chronic illness wouldn’t be simple – this person would need to have incredible compassion, unimaginable courage, and beauty beyond compare.

I met wonderful women throughout my dating days, but many had their own issues or just couldn’t deal with my illness, or me. After a while, you realize your shortcomings and build up your own confidence. I wasn’t at fault for being ill and I wasn’t looking for someone to feel sorry for me.

I needed someone who could look beyond my symptoms and see my drive, my spirit, and my sense of humor. I needed, Angela.

I had tried conventional dating but was drawn to online dating, which gave me the opportunity to focus on personality, wit, and character, and not worry as much about symptoms that might deter from a positive first impression. I devised a series of 20 Questions and through AOL Instant Messenger (IM) discussions; I was able to see whether we had enough in common to actually meet in-person.

I met Angela by pure luck or destiny. I came across her username and started a conversation about her name choice. We started with intermittent emails that led up to nightly IM exchanges. Following weeks of discussions, we began talking on the phone and ultimately meeting after three weeks. Our professional lives and geographical distance delayed our meeting in person.

When Angela and I finally met for the very first time, it was like meeting an old friend. I can’t remember any date that felt the same.

After a few weeks of our online courtship, I disclosed my ailment to Angela, unsure of how she would react. Happily, and true to her nature, she seemed unaffected when I dropped the bomb.

Now, we have been married for almost 22 years. Angela remains my best friend, my partner in every way, and the person I want to be around most. I am so fortunate, blessed, and lucky – and I know it!

From Angela’s perspective…

When I met Karl, I really had no intention of meeting the love of my life – I was 24. Our first week, we sent emails to each other and played 20 Questions via Instant Messenger (thanks, AOL!). Those questions and answers gave me a perspective into the person who was on the other side. He was funny, intelligent, and caring.

Karl revealed his diagnosis to me via telephone. I thought that Parkinson’s was a disease that only older people got. I spent the next hour asking numerous questions about Parkinson’s and how Karl lived with his condition.

I can honestly say that my first reaction was of surprise that someone who was 28 years old would have Parkinson’s. My next thought was to learn all I could about Parkinson’s.

I did some online searches and consulted a leader of an online Parkinson’s support group. Even though it’s been 23 years since we spoke, I still remember his sage advice: “Don’t get involved with this man with Parkinson’s, unless you are absolutely sure you can live with the unpredictability of this chronic condition.”

I thought about his advice and realized that I wasn’t about to give up a relationship with my soulmate because he had a chronic condition! I committed myself to him and our relationship. I realized that everybody has something that we are living with – none of us are immune from having challenges in our lives. I figured that if Karl could live with my personal challenges, and me, I could live with him, and his challenges!

What has worked for us…

It has been over 22 years since we’ve dated, so we are far from experts, and everyone’s relationship is different. But here are a few important issues that we feel everyone should discuss openly, when they are meeting and developing a relationship with someone – especially if a person in the relationship has a chronic condition:

  • Are you prepared to have open and honest communication? This is the cornerstone of any relationship. It’s imperative that the people in the relationship be honest and truthful with one another. If you can’t do this, you really need to take a hard look at yourself and your possible relationship. Can you communicate your emotions to each other without fear?
  • Are you prepared to trust one another? It cannot be understated how important trust is in a relationship. Trust penetrates all levels of a relationship: physical, mental, emotional, spiritual, fiscal, decision-making, healthcare choices, and more.
  • Can you truly love without conditions? Unconditional love means loving someone no matter what happens – loving him or her through the good and the hard times. Can you give your love when your loved one may be incapable of speaking, showing, or demonstrating their love due to the impact of illness?
  • Are you willing to be flexible and adapt? Flexibility in coping with a chronic condition is a must! Being rigid and unbending in your daily life can make living with the ups and downs of a chronic condition even more difficult. Adaptation requires always being on the lookout for choices, options and new approaches, with an open mind.
  • Can you listen without judgment? Listening is an important relationship skill that needs constant attention. It’s not easy, doesn’t come naturally, and requires development. Listening means being open and waiting for your loved one to get his or her entire message out without interrupting. Listening is important even when it’s hard to hear what the other person has to say.

Finally, you have to be confident and love yourself, no matter what the challenge, in order to love someone else. Be patient with yourself and your potential partner!

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