In my experience, sex and chronic pain are two subjects that are never included in the same conversation.
When I was first diagnosed, sex wasn’t anything I thought to ask about. My doctor reviewed different treatment options. I asked about pros and cons. He explained my medications.
I asked about side effects, both short and long term. He advised me to leave my teaching career. A couple of years later, and after quite a lot of denial, I filled out the papers and qualified for retirement due to disability.
For the year-and-a-half that I sought a diagnosis, my husband and I were confronted with some scary prospects -- leukemia, multiple sclerosis, cancer. Finally, the right doctor identified what no one else could -- undifferentiated connective tissue disease. He explained it as an autoimmune disease that has overlapping symptoms of rheumatoid arthritis, lupus, and myositis.
It was extremely uncommon. I told him I always “dared to be different."
And while a diagnosis did bring us some answers, it also brought more questions. No one knows how this disease will progress, or if it will progress. There’s a chance I could go into a period of remission. There’s a chance that the remission could be interrupted by flare-ups. There’s the chance my current disease might morph into something more definitive, such as rheumatoid arthritis.
No one knows except that this autoimmune disease of mine isn’t likely to completely disappear. In some shape or form, my family and I will most likely be dealing with it for the rest of my life.
Practically speaking, this means I live with daily pain, mostly felt in my left leg. Although sometimes the pain does extend to both legs, and sometimes it also includes tingling in my fingers and heaviness in my arms. Which means that certain activities like climbing stairs, squatting, and walking are more difficult for me than they used to be. They elicit some degree of pain, with some days being worse than others.
Over time, I’ve learned that the pain would affect me in ways I couldn’t predict. Trips to the grocery store can leave me in tears. I can play with my son on the floor and then be unable to stand up again.
And though I still have questions, I haven’t asked them. In the beginning, I was extremely practical. I wanted to know what was happening in my body, what would happen to my body, and what this all meant for my lifestyle and family.
Now, though, as we’ve lived with this new reality for a few years, I ponder how to adapt to the many unforeseen ways my life has been affected by this disease. Because of the pain in my legs, it’s almost impossible for me to now wear leggings and panty hose. I can no longer enjoy an occasional peach margarita because my medication cannot be mixed with alcohol. And, sex has become much more difficult to incorporate into our lives.
Since I began treatment, my doctor has never spoken to me about my sex life. My doctor is concerned with my symptoms and lab results, CT scans and MRIs. My sex life isn’t of interest to him.
Fifteen years ago, my husband and I wrote our own vows, promising to love each other through the “good and the not-so-good.” For the past few years, we’ve had long stretches of “not-so-good” -- a sudden hospitalization, a muscle biopsy, a change in my employment, and a change in our finances. They were issues we never thought would become a part of our everyday reality at this stage in our lives, while in our late-30s and parenting our 6-year-old son.
We’ve dealt with the logistical issues first, such as adjusting my husband’s work schedule so he’s working fewer nights and adapting our budget since my monthly paycheck has been replaced with a monthly disability check. But we’re still trying to deal with the sex issue.
This isn’t the first time our relationship has experienced a sexual dry spell. After our son was born, sex went on the bottom of the to-do list. We were two exhausted working parents. When our son slept, and who knew how long it would last, we wanted to sleep.
But back then we acknowledged the absence of our physical intimacy. There were X-rated suggestions, looks of longing, quick embraces that sustained us until we could make love. We adapted, and sex worked its way back into our lives. I wasn’t just someone’s parent after all; I was also someone’s spouse, someone’s best friend, someone’s lover.
In the beginning of our relationship, we satisfied our need for intimacy with cuddles, hand-holding, kissing, and making out. We made the decision to wait to make love until we moved in together (almost a year after we began dating).
Then we were like two kids let loose in a candy store. We christened our apartment by making love in every room. We stayed up late and woke up early to enjoy each other’s bodies.
After 15 years of marriage, that early thrill and excitement has faded. It’s the trade-off for a long-term relationship that brings with it solidarity, stability, security, and the knowledge of each other’s bathroom habits.
While a large part of my identity has been taken from me (after a 12-year career, I am no longer a teacher), I am still someone’s spouse, someone’s best friend, someone’s lover. And I don’t always know how to do that when I’m in pain.
How do I balance the all-consuming nature of pain with the wants and desires of my husband? Because, sometimes, it is mostly my husband who is noticing the lack of our sexy time together.
For another side-effect of my medications (in addition to weight gain and night sweats) is a reduction in my sex-drive. So while I miss being close to my husband, I don’t necessarily always miss the sexual act itself.
Pain and fatigue just aren’t a part of foreplay; yet pain and fatigue are a regular part of my days and nights. By the time our son is asleep, the demands of the day have taken their toll upon me. My legs feel as if elephants are sitting on them, my knees creak like our old stairs, and all I want to do is plop into bed. Without anyone touching me.
That’s where the guilt comes in. Sex has become one more thing I can’t do like I used to. One more way I’m different. Sex is just one more complication and one more example of the way we need to adapt to my limitations.
I’ve recognized a similarity between taking a bubble bath and having sex. Both activities used to be sought after and highly pleasurable. Now, it’s a slightly different story.
A bath isn’t as easy to prepare as it once was. And, there have been a few occasions when I couldn’t independently stand up at the end of the bath, and needed my husband to help hoist me up. With the bath, there’s a 50/50 chance that I’ll exit the bath feeling refreshed and relaxed or in worse pain than I started out with.
With sex, pain can hit in the middle of our intimacies. If it doesn’t, then afterward I sometimes feel more pain than I had when we started. Which makes me hesitant to engage in sexual activities and makes my husband hesitant to initiate them.
If we were still in the pre-sex stage of our relationship, I imagine our abstinence would be a whole lot easier to handle. We could get by with caresses and kisses. There would be no disappointment, no obligation, no guilt.
Now, those more innocent intimacies aren’t enough. I’m finding that the longer you’re married, sex becomes like an all-or-nothing type event. There are no bases to score; it’s either a home run or a strike-out.
Maybe I don’t need to have the sex talk with my doctor. Maybe, instead, it’s my husband I should be speaking with. For many years sex was taken for granted, as was our good health.
We’ve learned that life is full of unexpected surprises, some good and some not-so-good. But, we’ve got to figure out a way to handle it, together.
My husband and I are navigating this medical odyssey on parallel journeys. He can’t comprehend what it feels like to live each day with some degree of pain. And I can’t know the hopelessness that comes with watching someone you love writhe in pain and being unable to do anything to ease that pain.
My husband and I are having new conversations. Chronic pain in relation to trips to the zoo. Chronic pain in relation to a picnic in the park. And, chronic pain in relation to sex.
Chronic pain, by definition, means it’s long-lasting, persistent, and unending. Ironically, those are all the things I strive for in regards to my marriage.