Sex and Intimacy with Hepatitis C

Many with hepatitis C experience rough relationships after diagnosis. For myself, I went through a horrible divorce that really left me feeling alone, afraid, unattractive, and frankly sick. (All while in the middle of fighting for my life.) It was not that I blame hep C for this relationship ending but it contributed greatly to the dismay. I have never spoken of this aspect of my hep C because it was very personal and as an advocate, there were just somethings I refused to discuss. But, after getting back on my feet health-wise and gaining that courage and confidence back, I am now ready to open up and share. The frustrations of living with an invisible disease Hepatitis C is a silent disease. It wreaks havoc on your body, destroying everything in its path. Because it is on the inside, it is extremely difficult for those around us to fully understand what we are going through. Myself, being a very stubborn person, I would push beyond exhaustion and then have no more to give my then-husband. In return, it was very hard on me that no compassion was given to me when I really was fighting a hard day. Stressing the point that I "looked fine". This vicious cycle went on and on. My growing frustration at the pure lack of empathy or willingness to learn about what I was struggling with was damaging to our marriage. As was the confusion on his end that I was still working, raising kids, cooking, cleaning, and maintaining the household. How in his mind could I be that sick? I don’t blame either of us for this. I know what it is like having someone with hep C to care for. It is grueling, demanding, and frustrating at times (taking care of my mom in later stages). Sharing my lessons learned If I could offer any advice without giving martial counseling here, it would be that both partners try to be in the others shoes. Both sides have fear, uncertainty, stress, and emotions tied to you being diagnosed. So, to say this is only happening to yourself is wrong because this diagnosis affects every aspect of both your lives. If you are not getting the support from your spouse, reach out to a support group. Also, do not expect or put expectations on your partner to fully understand what is happening with your health. It is very complicated and hard for even ourselves to grasp the full impact this disease is doing to us. No one wishes to be sick, as does no one wish to not be that understanding compassionate partner. Learn to communicate, seek help, seek support groups. My foundation has a support group for just caregivers. Because the emotional demand on caring for one with hep C is great, I felt the need to offer support and a place to vent with other caregivers. Why? Because sometimes learning about a condition comes better from someone in the same shoes who has already gone through it. Talking with another caregiver getting advice can help. Finding support from the community You too as a patient are NOT alone. There are people who understand and can offer support, guidance and, instruction. Seeking outside support will then allow you both to come together with a better understanding for one another. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Seriously, how is your sex life living with chronic hep C? This is a subject that can raise a few giggles I know, but It can be a serious issue for people living with a chronic illness, and hepatitis c is no exception. Sex is a part of life. I am not fixated on this being the most important issue facing people living with hep c, and there are many, but it is something I often hear questions about in my work with community. Is it risky to have sex with hep c? The most common things I hear on the subject are about getting or giving hep c to a partner through sex. This can drive a wedge in personal relationships if there is an unwillingness to learn about any risks, talk about it or seek help from a good therapist or counsellor. Just to be clear I am not a sex therapist or a qualified counsellor on the subject. Most of the questions and inquiries about transmission are coming from younger people, but not exclusively, with libido concerns being more common in the older adult group. Questions about libido One could suggest that libido is commonly diminished with age, even in the general population living free of hep c. This is accurate to some extent, but does not explain or diminish the very real concerns that people express. As I am aware, many people maintain a healthy appetite for intimacy throughout their life. This is not to say that desire for intimacy will not ebb and flow as a part of a healthy life free of disease or illness. The question is whether your own hep c journey has caused your libido or that of your partner to be diminished. A few years ago I conducted an informal survey with a group of people with lived experience. The group was made up of people who had never treated, and those who had treated previously, and people with cirrhosis. Some were SVR, and generally speaking it was a cross-section of the population affected. The majority of people responded with a yes in respect to my asking if they felt their libido had been impacted by living with hep c and from, or during treatment. Some were candid about how they were affected, and the dialogue was healthy in my view. Possibilities for improvement The comments were from the full range as one might suspect. In general people experienced a decrease in interest in the time before treatment, as their symptoms worsened-if they did-during and after treatment. In most people who had treated in their past and were cured, they saw an improvement in their drive over time. New therapies promise greater cure rates and shorter duration of treatment. Newer drugs may see fewer post treatment issues like we saw with Sovaldi, but there have been anecdotal reports of some post-treatment concerns. To my knowledge at this time, there is no good data to support any long-term adverse health conditions. I am not suggesting for a New York second that one should ever avoid a cure! As someone who treated some year’s back - 5 years ago, I understand the desire and need for being hep c free. I am myself cured and regret nothing about my own choices around treatment. Thinking about the whole person We all share a common goal. To be well and to have the best possible quality of life. This includes our sexual health, as much as it includes our other measures of good health. No one piece is more important, except to the individual, and we are all individuals. Dialogue is key to understanding, just as much as science is important to learning and knowledge. Keeping the lines of communication open between affected persons is one way that can help, and I am of the opinion that there is no absolute answer or piece of the puzzle that unlocks the door to a perfect outcome, regardless of the topic. Reading, sharing, and if it works in your world, engaging a qualified therapist, but there is no one truth that fits us all. Don’t give up, there is always hope. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Some people prefer to keep their medical decisions private, while others prefer to share information with many. When it comes to the treatment for hepatitis C, there are often no consistent visible side effects (compared to something like the hair loss that often accompanies chemotherapy for cancer). This allows many patients to choose how open the wish to be with their hepatitis C diagnosis and their personal treatment plan. However, many doctors suggest that a person’s primary partner be involved in the treatment experience. This is because patients with consistent support systems often tend to recover at better rates and they may have less issue with side effects than those who try to go through the treatment process alone. Before the treatment begins, it is important for the person being treated (the patient) to discuss their needs with their partner, as much as they can plan in advance. This includes having a talk about boundaries, whether the patient wants or needs to be reminded about medication (or whether they would find that belittling), whether they want to be treated more gingerly or whether they prefer to be treated as typically as possible until or unless they themselves ask to be treated differently. The patient may also wish to discuss doctor’s visits with their partner so that the partner can be aware of any scheduling conflicts or to make arrangements to either be present at appointments or to understand that their presence is not needed at appointments, but that perhaps there may be medical news to discuss afterward. Having these conversations before the treatment begins allows both partners to talk through their own feelings and needs and to plan together how to best support each other through the experience. It may be easier to talk this out before the process begins as emotions may become heightened during the treatment process itself. If the patient is on their partner’s health insurance, there may be additional discussions or assistances needed in order to ensure that all of the treatment protocols and office visits are covered under the health insurance plan. If the patient will be missing work, they may need to discuss any financial implications this may have on the household so that their partner can also plan for that or discuss the ability to earn more money during that time in order to maintain financial balance. During treatment Although the pre-treatment discussions may have gone calmly and smoothly, the needs of the patient or their partner may change during treatment. This is very normal. This often happens because the partner finds himself/herself feeling more nervous or worried than anticipated or because they have questions they would like to ask the treating physician. The patient may also change their mind about how involved they want their partner to be based on the impact of the medication. In some cases, the side effects of treatment can lead to exhaustion or weakness. That may force the patient to ask for more help than they had expected or planned. In other cases, the medication side effects may include jaundice, constipation, or diarrhea, which may lead the patient to ask for more private time at home out of a need to preserve vanity or to not feel embarrassed during an already trying time. In addition, there may be issues or doctor recommendations that were not discussed or planned for at all. This may be because the treatment time extends due to changes in medication or because the side effects of the medication may require more specific at home care, such as major changes to the patient’s diet. These changes are often rooted in being asked to maintain a healthier diet in order to help the body to fight against the hepatitis C virus and the side effects of the medication. This may mean that there are more trips to the grocery store for fresh produce than is typical within the patient’s household. If the patient is feeling weak or does not want to be seen during a time of looking less than put together, the patient may ask their partner to run these errands. Overall, there is no right way or wrong way to handle the relationship or the roles of each partner in the relationship during the treatment process. Decisions made in advance may need to change during the process, decisions made at one stage of the process may change at a different stage of the treatment process. The best way to prepare for and to manage treatment is to agree to regularly check in with each other and to communicate. This can prevent misunderstandings or other added stressors during an already stressful time. After treatment ends Once treatment officially ends, the patient may want to immediately jump back into the life patterns they held before treatment. Some are able to do this easily. Others require more time and a slower transition. Some also choose to alter their lives, either based on how they feel after the medication has impacted them or because they have taken time to reevaluate their priorities. It is important to talk any changes or expectations over together to ensure that both partners remain on the same page and understand the choices they are each making, as well as how these choices will impact their relationship and their life together.1-3 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] There’s something so vulnerable about being sick. Hepatitis invades our liver and can leave us with some symptoms, side effects, and other awkward problems. Oh my gosh, and when sex is involved, we can become super embarrassed. I was single after my diagnosis, but surely didn’t want to spend my life celibate. Thankfully, the right guy came along and we dated during my 43-week treatment. After my sustained virologic response (SVR) showed a cure, we got married. Even then, there have been some very awkward sexual moments with hep C related problems. We get through those times and enjoy life to the fullest with hep C. I got through it all and am moving into my radiant future. You know I’ve got your back, especially if you need any tips about handling those weirdly embarrassing times. Telling your partner about hep C This one was hard for me. We had dated quite a while, and then one night I cooked soup at his place. Well, I make really good soup, and before you know it, we were very relaxed and feeling at home with one another. Things were going well, until I panicked about hep C. Pulling the sheet up around my shoulders, I blurted out, “I’ve got something to tell you!”. I was so afraid of what he would say that I asked him not to look at me while I talked about the virus. Luckily, he had a holistic health background and knew more about hep C than I did. He knew that it was not a sexually transmitted disease. He reassured me... and I may have fallen in love that very night. I’m sick to my stomach Seriously, I kept ginger chews in the night stand, and I always had an antacid nearby too. I didn’t have food allergies, or sensitivities. No, I had a stomach full of varices that could not be banded. Sometimes, I was just too sick to have any fun. There are works arounds, I assure you. Relaxing together while sitting up helped. So did listening to calm music. On some occasions, cuddling just had to be enough. Vaginal dryness After a certain age or with hep C, you may have hormonal imbalances. Things can get a little out of whack. Ask your doctor about a hormone cream. You can also try a water soluble type jelly or an oil. Find one that won’t upset your PH balance. Impotence Sometimes with hep C, our whole body is tired. Whether it’s fatigue, brain fog, hepatitis C, or just aging, your body may not always cooperate. Again, a doctor can help prescribe something, or you may have to get inventive to coax things along. If it’s fatigue, you may want to enjoy a long, lingering experience. Another option is to invite your partner to lead with their own energy. Building trust Having a relaxing and rewarding sexual experience is really about trust. Build a strong friendship that will last after the initial attraction wears off. Partner with each other in a variety of ways outside of the bedroom. Then you can have goals that go beyond a climatic release. Let strong communication drive your desire, and that kind of fire will burn long after the awkward sexual moments with hep C are over. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] For many people, dating is a daunting process. There are websites and apps, friends of friends, blind dates, and lots of trying not to get your hopes up. Perhaps the one nice part about it is that you typically know that everyone who is dating is generally in the same boat of anxiety, worry, and wondering what to wear. For those with hepatitis C, though, this experience can feel both additionally scary and isolating. When to talk about hepatitis C Often, people do not know what hepatitis C is or what it means when someone says they have it. Some people choose to post this information in their online dating profile, as they believe it is better to make others aware upfront than to risk becoming interested in someone who leaves when they are told about the hepatitis C. Others feel that this is providing far too much information in advance and, like telling someone about your crazy relative or secret love of silly putty, it is better to share information with someone as the relationship evolves and the situations arise. At some point, however, the connection between two people can reach a point where both know that they are interested in pursuing something more serious than simple drinks or meals together. Hepatitis C is not considered to be a sexually transmitted disease, so many of the viruses with pamphlets about how to tell your partner do not apply here. Since hepatitis C is transmitted primarily through shared needles or through blood exposure, it is certainly possible for a person to have a relationship without telling the other person or exposing them to the virus, simply by not engaging in sharing needles or in allowing the person to become exposed to your blood. However, sharing a toothbrush or razor can put the person at risk, as can any accidental injuries such as a bloody nose, cut from shaving, or other unexpected incidences. Some people believe that their hepatitis C diagnosis is no one’s business. Certainly, your medical information is yours alone to share. However, new partners may not always agree with this and some may feel betrayed or lied to if the relationship grows and the person does not share this information. It is important to share only when you feel comfortable and to do so with all of the information ready to discuss. What to say For those with hepatitis C for a period of time, the medical information may sound like common knowledge. It is important to remember that you may be telling someone about your diagnosis who has never heard of hepatitis C or who may think it is something very different than it actually is. When you decide to share your diagnosis, be prepared for reactions and questions that may seem offensive or ignorant. Try to remember that you have begun to get to know this person because you found them to be a wonderful person and try to keep in mind that their reaction may come from a place of confusion, lack of knowledge, and worry about you, someone they have begun to care about too. It can be helpful to share your story with them, rather than just your diagnosis. It may help if they hear how you became infected, if you know this, or what caused you to get tested. They may want to hear about whether they are at risk or whether they have already been exposed to the virus. They may want to know about what is happening in your treatment process, from your medical appointments to whether you are experiencing side effects from your medication. Although they may ask these questions, you can always tell them that you prefer not to answer, however doing so may make it difficult for them to truly understand your experience and what you want them to know. Rather than refusing to answer a question, you may find it better to ask why they are asking, so you can understand what their thoughts are and address them, even if you choose to do so without sharing information you may prefer to keep to yourself. Final thoughts on relationships with hep C Overall, choosing to share any medical information can be a scary thought and it should happen when you feel ready to disclose. Nobody wants to alarm someone or scare them away. However, building toward a long-lasting relationship takes risk and trust and working together to share information can be a bonding experience for two people who choose to be open with each other. Working toward a shared goal of understanding and respect can be a great way to continue the newly formed bond between you.1-4 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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