Being in a partnership while chronically ill is not an easy feat. I am very grateful for my partner and how we have gone through this together as a team. I know so many other patients who lost their relationships shortly after being diagnosed or in the thick of their treatment. The true colors of those we are close to comes out rather vibrant when life gets real and raw and unfortunately, that includes the ones that should be there the most.
Along with that comes the opinions of others and their comments and judgments. Some of my favorites my partner and I have heard over the years are “Does she expect you to just wait around until she gets better?” (and yes, yes I do), “You are so lucky to have someone who stays with you” (luck has nothing to do with it, we work extremely hard to make this work) and, of course, “You will be able to get married and have children one day!” (assuming we want to get married and can have children). It is a difficult subject to talk about.
Sex, a very important part of any relationship, is also a part of your life that is affected when you have a chronic illness. My partner and I were unable to have any form of physical contact for about two years when I was bedridden. There was no way it could have happened at all and it wasn’t even a thought that came into my mind for a very long time – 24/7 medical care took over instead. The more I healed, the more the awkward it became to get that spark rekindled. Does that make you feel uncomfortable? Me too!
Personally, my body is not in the best of shape after being in bed for two years. I am now in my 30s and things just do not bounce back like they used to. I take two different thyroid medications and hormonal replacement therapy which makes my head spin around backwards some days. There is just a lot going on, and often sex is the last thing on my own mind. It is hard to set something so crucial on the back burner in order to heal when I know my partner is healthy and willing.
Sex is something we make sure to talk about with each other as openly as possible, but that doesn’t make it easy. We used to avoid the subject like the plague since it would stir up a lot of guilt in me and make him feel like he was pressuring me. The more I began to heal though, the easier it was for each of us to talk about.
After going for so long without sex, it was also difficult for us to pick up where we left off. It is not easy to get back into having an active sex life after you have bathed someone and helped them to the bathroom. It was hard for me to let someone who I look at with so much respect and so much love see me so vulnerable.
It takes time and effort from both of us. I try to not lay around in pajamas all day. Just getting dressed, even if you are just sitting around the house, can make you feel good about yourself, and when you feel good about yourself, it is easier to feel good about someone else. Keeping up with the little things that show you care and appreciate your partner can help keep the romance alive. Throughout treatment we did little things like take a shower together or just spend time on the couch watching a movie.
One of my doctors mentioned in an office visit that many of his women patients have a hard time being intimate not only because of the pain and discomfort, but also because when they do not feel attractive, it also affects their sex lives. Being in a relationship, I can see the truth in this, but for those in the dating world living with chronic illness, this can pose a rather large barrier too. Dating alone can be stressful, so how do you mention that sex is not a possibility at the time when someone you are dating is a healthy active human?
It is complicated to squeeze sex into your schedule when you have to take pills multiple times a day and have to work around your good moments. Sex shouldn’t have to be planned. When you are dealing with an illness or a disability, the world as other people see it is turned upside down for you. The things that come naturally to others that they would never think would become an issue are an issue for us. Sex is one of those things that comes with a condition that you wouldn’t even think would be affected, but it is. Even sick people need love and affection. It should not be ruled out altogether and seen as impossible.
The subject of sex should be something more talked about with illness and not something you feel you can only speak with a therapist about in private or in couples’ counseling. Sex is something none of us should ever feel embarrassed about. Without it, we wouldn’t be here today. That is just a fact.
The phrase “in sickness and health” means something very different now than it used to. When I used to hear wedding vows I would always admire that two people were committing themselves to one another. Now I realize that those are just words. Words are easy to say, but actions speak louder. Life can become crooked and distorted at times and it is important to make the best out of what we have.
Being in a long-term relationship with someone, going through the ups and the downs, it is inevitable that this will affect your sex life. Our emotions and thoughts drastically affect how we feel about ourselves and our partner. That is the beauty of it though. When we go through something challenging together, or enter a new friendship or relationship with someone in a challenging part of their life, this can cut through a major part of the dating experience or erase that wonder from a relationship if someone would be there for you if you needed them to if you became ill. If you can go through health issues, you can go through anything together.
So do what you can for now, and try to let it all happen organically. Sex is just a word for a physical activity between two people, but you can change that definition and stigma and make it what you want it to be. You can change that definition.
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Thinkstock photo via Wavebreakmedia Ltd.