Lets Talk About Sex (and Dialysis)!

First of all, this post is not about having sex while doing treatment, although if you have some ideas, drop them in the comments below! ;-)

I recently had the honor of serving on a moderated panel for healthcare workers hosted by the National Kidney Foundation. Several questions came up, including “How has your sex life changed since dialysis started?” I realized that this topic also comes up in some of the Facebook groups from time to time, and while it is typically avoided, it is a serious topic that SHOULD be discussed. It will not be a central topic with your nephrologist, social worker, or transplant team, and your primary care physician is probably afraid to approach it. This blog will discuss this oh-so-taboo topic from my perspective as a care-partner, and it includes input from my wife, whom I asked “What do you wish I knew then, now, or what could other couples better understood about sex and CKD/Dialysis?”

Sex. Why do we tend to avoid it when we live in such a hypersexualized society? I have no idea why there is a stigma, shame, or an avoidance of the topic, as it is so important in normal settings. It seems to only be a topic in movies, social /images/blog/8-12-21, and of course the tragedies of sex that is newsworthy. However, it is worth discussing.

Before I go any further, I must put my situation into perspective. I am a male, married, to a female, and we are approaching our 10-year anniversary. We are both in our, I really hate to say, late 40s. In addition to CKD and HHD, Melody has a range of other medical conditions, some that helped to contribute to her kidney failure, and a general loss of libido. Our sex life has had its ups and downs as a result but has taken an interesting turn during this transition and now normalization with “life with kidney disease and dialysis.” My perspective is as a male care-partner who is overall healthy and cannot relate to chronic conditions, or the perspective of a woman and her libido/needs or understand that perspective. This blog is one man’s take!

Sex sure is fun! I not only enjoy it, but need it from time to time. There are lots of reasons why people have sex ranging from physical to emotional or from biological to religious. A recent survey conducted of college (undergrad) students provided 237 reasons for “why sex.” Sociologists generally say there is only one reason: we (well most of us) are wired to do so—it is like asking “why do people eat?” From a basic biologic need, sometimes we just need it, from an anthropological perspective, we have a need to procreate, and from an emotional standpoint, it is the intimacy more so than the physical…uh…release. As much fun as sex can be, it can also be problematic and cause issues between partners, like being turned down, leading to frustration or feeling rejected and mentally feeling not loved, or desires not shared by one’s partner. The four main categories of sex are:

1. Physical: Pleasure, release, curiosity, or basic animal attractiveness

2. Goal-based: Social status, make a baby, or revenge

3. Emotional: Gratitude, love, or commitment

4. Insecurity: Self-esteem, to keep a partner, and of course duty.

As men and women vary, so do their reasons and desires when it comes to sex. Healthy sex is simply good for a relationship, but for every good reason for sex, there are probably at least two negative aspects possible.

Before I continue, let me stress the cliché that is…well quite applicable: COMMUNICATION IS THE KEY.

We have struggled over this topic in our relationship. Part of these struggles were contextual; a change and adaptation of such changes within other major changes happening in our lives with dialysis and the like. For a while, I considered maybe I was less attractive to her or the times “I got me some,” I somehow no longer met her needs. I thought sometimes, this was the only thing she really had full control over in her life, and perhaps this was her way to exercise what little control she had. And, as this blog started, we had never really talked about it. After all, who am I to lay out a case for this thing I needed, when she is battling to stay alive? This did not minimize the sexual frustration nor the insecurity, but…why lay something else on her to worry or feel bad about?

We eventually did slowly begin to discuss the topic, and specifically my needs and perceptions. As difficult as it seemed like it would be, it really was a great series of conversations. So let’s get back to sex. Besides reasons to have sex, there are also many reasons NOT to have sex. Anyone with a chronic condition can probably attest to this from a basic physical aspect: they just don’t feel like it. However, there is more to it than just the obvious. In addition to not “being in the mood” or physically just not having the desire, there are factors that contribute to this outside of the physical. Not only is sex about the physical nature, there is also an aspect of intimacy that comes along with it. Women tend to focus more on intimacy, body-image, and “how I feel like I look.” Perhaps many men do, too, but over the years, I have heard this most often with women than men in conversations. What is happening to her body?

Upstairs (mentally) there is fear and anxiety, as I have written about before, like a desire some days to just give up. This sounds like depression because, well, chronic conditions can lead to situational or embedded depression. In the beginning, before getting a fistula, Melody had a chest catheter. Basically, this was two lines with big ports protruding from her chest with little way to cover it and showers out of the question. She did not feel sexy because the catheter was sticking out of her. In her mind, this somehow made her less attractive. After her fistula, she realized she had the signs of “sticks” and knew over time as it matured it would get bigger, an attack on her version of her body image. Okay fine, she is also a little vain! There, I said it!

When Melody does not feel good, or feels like she looks gross, feeling sexy and being turned on is akin to convincing an Eskimo to live life in the Saharan desert! Your girl (or boy), may just feel like they are not attractive or sexy, and that is why they do not have the desire to “get it on”

There is also a security component to this. If Melody is feeling insecure about her health, the future, or anything else, it will lower her desires. All of these factors work together to contribute to the libido. You could probably consider libido as an account that can increase or decrease, the latter being from intrinsic factors largely out of anyone’s control.

So what is the solution?

• Meet your own needs elsewhere? That surely will help her feel better about herself!

• Pent-up frustration that continues to grow (and, like an account, will come out in other ways also won’t help her feel better about herself!).

• Give up?

• Wait around being fully prepared for when that rare and unpredictable moment occurs that she wants it?

While these are all possibilities, I don’t recommend any of them. It should be stated that Intimacy leads to sex, sex provides intimacy, but these are two things that are also separate. Yes, we are getting ready for clichés! Intimacy can lead to sex, can be summed as part of sex, but it also stands alone and provides a similar satisfaction to the physical act of sex.

As one of the primary factors leading to this outcome is psychological and emotional, this is something that you CAN help to make positive contributions too! I realize every person is different, their higher order needs vary, and so is also true of genders. What tends to lead to one feeling loved, wanted, desired, also vary by person. Women tend to need more assurances, foreplay, and the feeling of being loved before getting “in the mood”, whereas men tend to need more physical stimulation and have more basic physical need that gets them in the mood. As my wife explained it, “with men, it is obvious when the parts don’t work. With women, while the parts may be fully able, it is not as easy to see that the parts do not work.”

Besides a lack of desire, the pump just is not primed, leading to painful outcomes with intercourse. How do you prime the pump? Further, when the pump is primed, she has noted that to… uh… get there, since on dialysis it seems to take a lot more effort, if at all. Perhaps some doctor can explain the science behind how dialysis impacts both libido and the physical systems that make the act of intercourse go… uh…smoothly.

Well, here are two revolutionary ideas: Foreplay, and long before planning to get to the bedroom, intimacy. In fact on the latter, intimacy can be almost as satisfying as the sexual act by itself (possibly more so for women then men). One quick shameless plug: As a minister who provides pre-marital counseling, and helps married couples find their way back to one another, I have read many books on relationships, intimacy, and the like. By far my favorite one is Gary Chapman’s “The Five Love Languages.” It Is not armchair psychology nor a deep academic theoretical book, but rather a practical guide to understanding how people receive and give love. I say this here to stress the point Communication is the key—each of you both knowing and understanding how the other “receives” love. Recognizing when love is being given even if it is not your “language” can have a bigger impact on your sex-life and overall relationship then you may think! The stronger your communication system(s) and relationship, the higher the likelihood of having sex.

And let me stress here, communication is not just the basic communication. You may be thinking “We talk all the time!” What do you talk about? My wife tires of the same conversations about…her health. She is tired of hearing about it, and of it being the central topic of everyone. In all honesty, I tire of it too sometimes, at times it seems that all anyone ever wants to talk about “how is Melody doing?” Not, “Is Melody painting anything new?” or “Has she started the interior design of that other room yet?” but instead it is always about the topic she least likes to talk about, the dreaded mandatory topic she can’t escape, the recognition of her dependency on a loud, obtrusive machine to do the work that most people have two kidneys to do! This gets old and leads to the mental state that lessens her sexual desires. So, don’t talk about that as you plan to talk and listen more!

Trust me, read the book, and do so together. In fact, there is a free survey that get you in the ball-park if you are too busy to read a short book.

Try to help increase the intimacy. By this, (cliché alert), bring back the romance! Find ways to do the cutesy things you did when you were dating. Remember your most awesome and romantic dates? Go do some of that stuff. I do not know what that looks like for your partner, but maybe that is washing her car, telling her (and being authentic) how much you adore her, or how great she is doing with handling her medical situation(s) and how much better she is in doing so then you would be in her situation. This may be holding her and stroking her hair, or surprising her with getting the kids, or animals, or whatever takes her time, squared away and letting her have a spa day or a simple mani-pedi time, or it may be giving her a new dress, shoes, and some other thoughtful gift. The key to intimacy is helping her feel like she is normal, as beautiful as you know that she is, and working around and within the confines of this dreaded disease and time/energy consuming treatment.

Intimacy can also look like turning off all the electronics and just listening. Make (well I say this as someone who is an avid cook) or take her out/have her favorite meal delivered, and just talk. Yes, I said it, just sit and talk, (her doing the latter; you actively listening) and listen to her fears, desires, random musings, or anything in between. In other words, make a point of forgetting how to multi-task and instead shut the world down and pretend for a moment that you are the only two people on the planet. You will be surprised as what you will learn and how this will strengthen your relationship and increase her security and intimacy and…you may just get lucky! We men tend to be “problem solvers” so we listen with great ideas to solve the problem, and women tend to want to just…Well TALK and have someone listen. So, do that. Do a lot of that.

Maybe not (and don’t let it be a goal) the same day, but all of these little things help minimize the roadblocks she is facing in order to get to at least having the desire for sex. Set the mood and help her pave the way to a nice hot bath, give her a massage, stroke her hair, or just sit and caress her. The worst thing you can do is whine, complain, or pressure her. Remember, this disease and its treatment is physically and mentally exhausting, so just being tired all of the time is also a pretty big roadblock to her getting in the mood and/or having the energy to do what she really wants to want to do.

None of what I have just described will lead to im/images/blog/8-12-21te results. Consider that this disease takes a gradual toll on the body (and mind!) and being in this sex-less situation did not occur suddenly, nor will it fix itself quickly. It may never even be “fixed” but this helps to address or minimize the psychological roadblocks. In short, she needs to feel as though she is desired, attractive, pretty, and normal. I have learned on this journey that my wife has another world inside of her head that centers around topics such as “Is this my life forever? Am I a burden? I am not worth this trouble, he deserves better.” These are completely intrinsic thoughts and values that only she can process, but helping her feel loved, appreciated, that she is doing a great job in handling her conditions, and my willingness to love her “in sickness and in health” can help with this secret world in her head. Being open to listening, can help me hear these things that are only in her mind.

When the bedroom does open, even if it is unexpected (and it probably will be), be patient, take your time and remember, things physically may not work as well as they used to, but if you focus more on the journey (take the scenic tour!), driving slowly and patiently pointing out all of the trees and roadside stands along the way, it will surely help her prime the pump and oh my what a glorious fountain it will be when that geyser erupts!