The fairy tales would have us believe that the difficult part of relationships are the courting/dating/getting to know each other stage and then it's "happily ever after", but anyone who's been in a serious relationship for any length of time (and yes, I'm including marriage/domestic partnerships in this as well) will tell you that the hard work starts after the honeymoon stage and continues on throughout the length of the partnership. It's hard work when both parties are healthy. But, when one is sick, it adds another layer of stress onto the relationship.
Let's look at a scenario. Think about a wedding you may have attended or a wedding you saw in a movie or show that used the vows "In sickness and health." Usually, both parties are happy and shiny, and the words "in sickness" don't really sink in. It's an abstract concept. "Of course, I'll stick by my loved one if they're ill" is easy to say when their loved one has only had a cold during the course of the relationship until this point. Chronic pain/chronic illness is a completely different ballgame.
I'm very fortunate in my marriage. My husband knew I was dealing with Fibromyalgia when we met. During the years before we got married, he saw me at some of my sickest points. Still, neither of us could have predicted the two surgeries I've had or the other diagnoses to come along or how my health would decline and that's added quite a bit of stress, but he understood that there would be good days and bad days. He understood that my desire to work and live my life meant that he would have to take on more of his fair share of the household duties. (And when it was determined this wasn't a strength of his, the housekeeper we invested in was the best for both of us and our relationship.) This doesn't mean he doesn't get frustrated with me or my body at times; he's only human. But in many ways, because we've dealt with some pretty serious things, we don't get caught up in the "small stuff drama" as much. (One positive thing about illness is that it will put things into perspective.)
I know a lot of Chronic Pain Warriors who have not been as fortunate. Many individuals who have been diagnosed later in life have gone from healthy (prior to marriage or commitment) to chronically ill, and their partner doesn't get it. And quite honestly, I understand. I see both sides of the issue. The ill person who was once full of life has now had their life reduced to being sick and their own frustration at not being able to do everything they once could is high. But their partner--perhaps despite saying they'd stick around "in sickness"--didn't sign on for this. The healthy partner sees how the sick one has changed, and in many cases, now becomes a caregiver for the sick partner. The relationship dynamic has now changed. There may be feelings of resentment on both sides of the relationship. The caregiver now sees their partner in a different way and may feel less than romantic feelings toward their partner, which can really change things.
Please do not misunderstand me; I'm not saying that romantic relationships have to fail when someone is chronically ill. Many relationships fight their way through the battle and come out stronger.
Communication is key--constant, open, and honest communication. The Chronic Pain Warrior needs to communicate their needs, their frustrations, and their desires and the partners needs to communicate their own needs, frustrations, and desires. It's important to be able to communicate openly about all of this, because both sides have needs, frustrations, and desires, and not being able to acknowledge or communicate them is only going to lead to resentment.
And it's not an easy thing to listen to your partner tell you, "I'm frustrated with you because..." It requires a certain level of openness and maturity to not respond with, "Well, yeah? I'm frustrated with you because...!" But if you can both communicate what you each feel challenges are, that leads to the opportunity for a conversation that can create solutions, or at the very least, clears the air of any lingering resentment.
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Since this is a post on romantic relationships, I would be amiss for not discussing the impact of chronic pain on a sexual relationship. (This is the Not Safe For Work (NSFW) portion of the blog.) For those who identify as asexual and are in relationships, this may or may not apply to you.
There are people out there who enjoy pain in a sexual manner, but I have yet to meet a Chronic Pain Warrior who's a masochist. (Not that they don't exist, just that I haven't met one yet.) In my experience, people who experience chronic pain find that it doesn't add to feeling sexy. Fibromyalgia, Lupus, and other invisible illnesses can also impact reproductive systems, adding to more pain and discomfort, which can account for low libidos. The fatigue that's associated with these conditions can also be problematic; who wants to have sex when you have no energy?
I want to address an issue that may make me very unpopular.
I belong to a number of Chronic Pain/Autoimmune Disease/Invisible Illness support groups, and the following question occasionally comes up: How do I get my partner to understand that I'm in pain and can't have sex with them?
Typically, the individuals posing these questions are women and they're referring to their male partners. (Again, this is not to say that men don't experience chronic pain. Chronic pain can impact all genders.) And the responses are typically from other women lamenting how "men don't get it" and "he'll just have to deal with [not having a sexual relationship]".
I don't agree with this stance. And before anyone lam basts me in the comments, hear me out. Sex is healthy. It raises endorphins (which can improve mood and decrease pain level), and increases intimacy and connection with your partner (which can also improve mood).
I'm also an advocate for couples creating their own definition of "sex." There's this heteronormative idea that "sex" is only penis-in-vagina penetration, but people all over the sexual orientation spectrum can inform couples differently. And while what may work for one couple may not work for another, it doesn't make it any less sexual or intimate.
I'm an avid reader of Dan Savage, advice columnist who can be somewhat controversial at times, but he makes some great points when it comes to mismatched libidos negatively impacting relationships. That happens when both parties are "healthy", but what happens when it's an illness that's caused a rift in your sex life? Simply refusing to acknowledge the sexual needs of your partner isn't fair to them. And you might be refusing to acknowledge your own sexual needs as well.
Because it's okay to have a disability AND be a sexual creature.
What many don't recognize is that people with disabilities (including chronic pain) can have desires to be sexual as well. There may just need to be some workarounds to make things happen. Here are some resources for the over 18 crowd:
- Good Vibrations- A great place to shop for toys and stuff, but also a great resource for education and support. They are extremely "woman friendly" and cater to all genders and sexual orientations. They have extremely knowledgeable staff, and if you're in the California Bay Area, check out any of their Bay Area locations. (And check out their articles on Sex and Disability.)
- Liberator - In short, they sell furniture for sex. Their wedges and ramps can provide extra support, which can be very helpful for individuals with chronic pain and conditions like Hypermobility Joint Syndrome. The furniture is constructed out of sturdy foam that's lightweight, and it can also be used for restorative yoga poses and meditation.
- Book: The Ultimate Guide to Sex and Disability by Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette is a great resource for a multitude of disabilities, including Chronic Pain
Are there times when sex just can't happen? Of course. It all boils down to open and clear communication with your partner.
Definitions of Medical Conditions Listed in my Medical Chart
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