Not Tonight Honey, I Have Chemo: How To Rekindle That Spark

 

Heart racing.  Flushed face.  Can’t breathe.  Hot and sweaty.  On Valentine’s Day these phrases may conjure up images of feelings of love and desire to some. The way that certain someone makes the butterflies flutter around in a nervous stomach to most people means star crossed love is in the air.  For those with chronic illness, the heart racing most likely is from pericarditis, the flushed face is from a wonky thyroid, the lack of sufficient air is from pleurisy, the hotness is from night sweats and the stomach butterflies are from an impending vomit-fest from a weekly dose of chemotherapy.  Doesn’t sound very romantic, does it?  For people living with chronic illnesses, being in “the mood” is often a chore in itself and usually has absolutely nothing to do with emotion, but everything to do with physical ability.  When your body aches, your joints are swollen, your hair falls out, you’re bloated and puffy from steroids and you feel about as attractive as Jabba the Hut, it’s hard to convince yourself that intimacy would put a smile on your face as much as…oh…say an Epsom salt bath, heating pad and a couple of pain killers.

Unfortunately for a lot of marriages plagued by chronic illness, a loving relationship between a couple is severely tested when it becomes a threesome.  Yep, I said threesome….you, him and your illness.  Marriage with no invaders or complications is hard enough to maintain these days, but adding a chronic invisible illness into the mix can test even the strongest of relationships. I’m guilty of it…the “there’s always tomorrow” syndrome is a mainstay in my house.  “My back hurts…not now, my joints are swollen…not now, I’m exhausted…not now”, or my personal favorite, “not now, I look like I just got hooked up to an air hose and can’t see my feet”. Eventually, the healthy spouse feels as if it’s pointless to initiate any form of intimacy…it’s easier to not even try than to get shot down again at the hand of their mate’s constant pain.

That feeling lends itself to the question, “how do you get the spark back”? What I have learned in ten years of being sick is that intimacy is a two way street.  Sure, he needs to understand that there will be times when being touched is the farthest thing from your mind…in fact, your body hurts so bad that even a hug has you wanting to punch him in the stomach.  However, we as chronically ill people, need to also realize that the give and take also extends to letting them know that you still love them…that you still care. 

There’s no “quick fix” for such a personal issue between a couple, but here are a few tips that are easily implemented and just may make the difference in understand on the parts of both parties.

1. Try to avoid automatic excuses. “I’m tired, I don’t feel good. The pain is unbearable.” I know most of us are guilty of saying these phrases, sometimes automatically. Here’s the cold hard truth…there’s not a “perfect” time for romance when you are chronically sick.  Chances are, at any given time during the day, we are in some sort of pain. Stop and evaluate your pain level.  Use that “pain level chart” the doctors use that we love to hate, and put a value to it.  Level 9 pain…absolutely apologize and ask for a rain check on the romance.  Level 4 or lower….ask yourself if half an hour of affection would raise it to a 6 or 7.  If not, then put on some soft music, and try to relax. You may surprise yourself and find the endorphins actually raise your spirits and push the pain to the back seat for a while.

2. Save some spoons for HIM. As much as I’d like to admit that I am NOT guilty of this, I am. Weekends are a time in my house where I catch up on housework, sleep or laundry and by Sunday I have already depleted all spoons in the kitchen drawer as well as the cracked plastic ones shoved in the back. Is it annoying to have a dirty bathroom sink?  Of course.  Will it be there tomorrow?  Absolutely.  Try sometimes to not spend Saturday cleaning your house and subsequently being exhausted and bed-ridden. Save at least a couple of spoons for him…even if it is just for sitting next to each other on the couch watching television.  Intimacy doesn’t always have to be physical.  Bonus:  Watch episodes of really bad reality television…your life won’t seem so bad after seeing the train wrecks of lives those people live.

3. Be attentive during your time together. Even if you’re just sitting at the dining room table, having dinner with him, rather than your usual breakfast/lunch/dinner in bed, try not to make him feel as if he should feel guilty for requesting your presence.  Avoid cursing out your joints as your hand cramps up cutting your chicken and muttering under your breath, “I hope you appreciate this….I’m about to fall in the floor from being vertical.” (Side note: this will NOT make him want to scoop you up and carry you Harlequin romance book style to the bedroom.) Promise yourself not to talk about your illness for just one night. Do your best to smile and ask him how HE feels and how HIS day was. It will go a long way with him…trust me.

4. Make a thank you list.  By list I mean all of all the things you notice he does that you don’t usually thank him for: Picking up your medication on his way home from work, cooking your favorite dinner and checking over the kids’ homework, or simply leaving you alone in a quiet room when your pain is at an all time high. Too often, these things get taken for granted and we come to expect them instead of appreciate them.

5. Lose the granny panties.  Acknowledge that the steroids are necessary sometimes, get over feeling self-conscious and buy some sexy clothes that will show him that regardless of the fact that you just pulled out a clump of hair and you’re carrying around enough excess water weight to fill a bathtub, you still want him.  As much as those ratty sweatpants, t-shirt from 1989 and mismatched Halloween socks are comfortable to YOU, don’t expect them to be featured in the Victoria’s Secret catalogue any time soon.

6. Have a date in your own home.  Sometimes it just isn’t possible to go out on the town when you’re chronically sick.  It’s a fact of life and as much as we don’t want to admit it, there are times our bodies won’t cooperate with us enough to even walk out of the front door. Being romantic doesn’t have to mean hitting the local Olive Garden to eat your weight in salad and breadsticks.  It can mean a quiet but simple dinner at home.  Extra bonus…order take-out, have him pick it up and throw the “dishes” in the trash.  Nothing will kill a mood faster than pan grease.

7. Talk. Sounds too simple, doesn’t it?  It is. One of the biggest ways to recapture intimacy is to simply communicate.  Whether it is because of constant pain, or years of the same routine…or sometimes both, along the way we forget to talk.  Only by communication can we begin to understand how our significant others feel.  In our world filled with pain, pills and doctor’s appointments, the topic of conversation is usually how WE feel.  The key is to remember that sometimes…it’s not about us.  Sometimes, It’s about them.
It’s all of the little things we do that matter at the end of the day.  While offering a smile and saying “thank you” may seem simple to us, it may mean the world to them.  Let the everyday idiosyncrasies of your relationship slide for a night and try to remember the reason you fell in love in the first place.  There will be plenty of time tomorrow to teach him again that the toilet seat, indeed, does go down, contrary to what he may think.

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with SLE in 2001 at the age of 27 and in the time since, has added Scleroderma, Hashimoto and Celiac disease. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla.  She can always be found somewhere in social media-land causing some sort of trouble.  Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.
©2019butyoudontlooksick.com
  • Devin

    I’m 21 and he’s 24 so this isn’t something expected to deal with until…. thirty or forty years from now. I got into a relationship knowing about one autoimmune problem, two years later stumbling on seconds and thirds. Not married but might as well be. Sexy underwear and robe is an easy thing that can make a big difference. Shaving is worth the spoons, makes me feel better about how I come across and I’m sure it makes me come across better to him too. If you’re not closed minded about it, ‘toys’ can be a lifesaver, especially if you have a lot of joint pain it will save your wrists and they think you’re just trying to spice it up more!

    Little things that a reminder you are thinking of them tend to help during the ‘dry spells’ that come up with flares, having an unexpected pizza prepaid and delivered while I’m out or ordering a new book or video game addressed to him, everyone loves getting mail. Even if it doesn’t help us as a couple it keeps him busy when I can’t lol, which stops a lot of petty arguments.

  • Alan W

    As the male/caregiver who has to hear “not tonight, dear…” my biggest advice is simply…be patient. When they feel up to the intimacy you desire, they will let you know, trust me! The signals they will send can’t be (and shouldn’t be) missed!

  • Pretty nice post. I just stumbled upon your blog and wanted to say that I’ve really enjoyed browsing your blog posts. In any case I will be subscribing to your rss feed and I hope you write again soon!

  • Jeanette

    I’m afraid I can’t relate to this one. Wish I could though.
    An understanding hubby was what I needed after a very painful abdomino perineal resection. One of the nurses told him everything would be back to normal after 4 months. ( I don’t think she realised what this operation entailed)
    He wasn’t very sympathetic, (angry at times) and thought I was lying about it still hurting many months afterwards. I rarely denied him sex, but he couldn’t understand that it had to be very very gently.
    I left him 3 years later.

  • I, as I know so many of us “spoonies”, am so grateful that you are always so open and transparent for us. Your articles are always, fun, encouraging and intelligent.

  • I’m lucky that my partners are patient with me, and that intimacy doesn’t have to involve sex. Of course none of them mind that one of the unexplained symptoms is that I really can’t stand things touching my skin, so I spend most of my time at home naked.

  • As always Steph, nail was hit on the head!

    As a newlywed, and new spoonie, the stats out there scare me to death – 85% of marriages with a partner suffering from a chronic illness will end in divorce. The fact that I’m constantly in pain and can’t be intimate doesn’t help, either. We do have great communication skills, spend a lot of time together, and I always want him to talk to me about him.

    You are absolutely right, sometimes a 4 isn’t an excuse! Heck, a 4 is a great day! It’s a new way to think about things. Thanks again!

    Miranda Stein

  • Dawnh

    Excellent article! We have had this issue in our home quite often. My husband has all but given up on our sex life! Thanks for posting this. I will take this advice and save some spoons for him.

  • Sharon

    Great essay – thanks for the insight and excellent advice!

  • Angie_stl

    Steph, GET OUT OF MY HEAD! How do you write exactly what I need or what I think about? It’s crazy really.

    Andrew, I would encourage you to write something from the male prospective and send it to Steph or Christine as a guest writer. I’m sure the spoonie men out there would appreciate it. As would their significant others, if your suggestions are as helpful as Steph’s.

  • Amy

    Steph, I love you. Your article made me cry. Your strength, insight, courage and humor in the face of it all, continue to be an inspiration. Thank you for writing such valuable articles; your words probably help more than you know. I continue to keep you in my thoughts & prayers and root for you on a daily basis. MWAH!

  • Courtland

    As the husband of the spoonie author I took this article more as a reminder to ALL people (men, women, spoonies and non-spoonies alike) that the Hallmark of ALL meaningful long-lasting relationships is communication. While intimacy and sex is a part of many relationships and marriage it is only a portion of what really matters. God willing… when you are both 90 plus years old in the nursing home looking back at the decades together I would hope the memories of ALL the good times with friends and family would be what stuck out most. The “sex” should be more of the glue that kept things together rather than the foundation. That is what I took away from the article.

    Andrew… I know BYDLS is always looking for qualified well-versed staff writers. Actually, I think they just sent out a request for more writers. I’m sure a male-spoonie’s perspective would be very well received. This might be something you want to look into.

  • Well timed indeed! Automatic Excuses FTW ! I relate in a big way! We do tend to get into a ‘rut’ when we’re doing the same ‘Pain Polka’ Dance, day after day after day. It’s not hard to see how one can end up feeling about as sexy as a ‘house plant’ when you spend every waking (and some sleeping) moments in excruciating pain and/or malaise!

    I’ve learned something recently about my teensy tiny sex drive, that might help other Spoonies? We’ve already established that feeling like the inside of your Cat’s Bottom does NOTHING to spark a flame of desire, right? But recently, I’ve noticed that even if I am not necessarily ‘in the mood’, I can sometimes ‘get that way’ after spending some quiet moments kissing & snuggling with my Sweetie. Somehow, it breaks through the layers of Ick to expose the still ‘Sensual Being’ underneath!

    Obviously this is a lost cause if you’re in a bad flare etc. but there is something to be said for just letting go, and letting you’re natural body instincts to take over for you.

    Our bodies naturally remember Passion & Pleasure, even if we are always on ‘Overload’ from being in constant physical pain.

    Thanks as always for the fantastic article Steph!

    Pain Free Days for all!

    ^_^

  • Steph

    For the record, I never said sex is what makes a marriage. If you re-read carefully you will see that most of the tips I give are not even related to actual sex.

  • Steph

    Andrew I was simply writing this from MY perspective. I can’t accurately write something from a male perspective seeing as how I’m not one. Nothing sexist about it. Sorry you felt that way. Spoons and hugs to you

  • Courtland

    Great article Babe… I can say this because we live this. As you mentioned, after 10 years we have both learned to communicate much better than ever. I appreciate you and LOVE YOU!!!

    BTW… Can’t wait for your parents to read it too. Sorry, had to go there.

  • Well written! I think all chronic spoonies can relate in one way or another. My hubby and I have great communication and I swear it’s the glue holding us together when the lack of intimacy threatens to pull us apart.

  • My, my, my did I need this one today! The sex life is in the dumper and I have my ususal early everning fever:( Sooo… I took a bubble bath, gave myself a pedicure, PAINTED my toenails….AND put on my prettiest blouse in his fave color and my awesome jeweled and comfy flip flops! (pants too, don’t want to scare anyone;) I slathered my body with the perfumed lotion he gave me for Christmas so I would smell yummy if he came close. Woo-hoo…for me? He saw me and said,”Where are YOU going?” LOL I guess that’s only fair since the love train stopped short of my house today…I’m still recovering from practicing to be the “Porn Star Dancing” Queen for him on my dining room table. (this probably fits in the TMI category, but it’s funny now that I think about it!) Sooo, I’m skipping the take out tonight and actually cooking a candle light din for him:) He deserves the best…Godiva Chocolates for me:) Sigh…26 years and still full of surprises! Thanks girl!!!!

  • Liz Walker

    My husband has been disabled since 94, I love him sex is not what makes a marriage.

  • Thanks for the awesome comments guys! You don’t know how much they mean to us writers~

  • Rawr….go on with yourself Elaina!

  • Elaina B

    Always good info!
    For myself, I find that my husband is always more willing to help me on my bad days when he knows I’m willing to get out of my pain zone for a little lovin’ time. 🙂 Plus, I do feel really good for awhile afterwards! I’ve found that even on my worst days, those endorphins are lovely & the snuggle time afterwards goes a long ways in helping me relax for a decent nights’ sleep. FMS can kill a sex/intimate life!! You have to fight it or its just one more thing it will take away from you.
    Speaking of which…hubby is home. 😉

  • RedCurlyHead

    Excellent reminders! Thanks. And in just love how you take something serious and make it “real”.

  • Nice piece – it takes some courage to write honestly about this subject. But I have to say that I didn’t realize until halfway through it that it was actually addressed only to WOMEN with a chronic illness. There’s a cultural assumption – which is inaccurate, in my view – that men are always the ones pursuing sex and women are the ones pushing it away. Although I’m sure it’s not the intent, this piece seems to inadvertently reinforce that idea. As a man with chronic Lyme Disease I assure you that it takes a toll on on my sexuality which results in increased strain in my marriage. It’s a culturally complex thing when men lose their sex drive. In spite of all the Viagra ads out there, as a culture we barely know how to talk about it. So, while I’m certain that this piece speaks to the experience of many women, I also wish that we could broaden the discussion by thinking about sex as is something central to the experience of both men and women, and that we could consider the effects of chronic illness on sexuality in an even more expansive way.

  • torie

    amazing!

    I didnt realise that I already try to do alot of these. must work on the steriods issue though – getting me down.

    perhaps im very lucky but when it comes that “that” its the only time I dont feel in pain

    big gentle hugs to all and spare spoons around x

  • Kathy Auen

    What an eye-opener!! Although I know I am guilty of many of these things, this article really brought home how my spouse might feel. I’m sending it to him now.

  • Bettina

    As usual, I feel like this article was written just for me! Intimacy, closeness and, unfortunately, sex, are often in short supply in my house lately. Sometimes I forget that a marriage consists of two people – not just me and my illness! It helps to be reminded that my hubby isn’t selfish for having needs, but that maybe I could save up a spoon or two and be a little more “giving”. Thanks for the timely reminder!!

  • Oh this is so true.Tonight for me its re couping from a nasty infection 🙁

  • Teri Kennedy

    Perfect for me, especially today! As usual, you know just how to put in words what I am thinking!

  • Ivy

    This one really hit it on the nail! It’s so easy to forget when you’re in pain anything other than the pain itself. The Doctors scale method is such a great idea……and God Knows that a four really is a good day on a scale of 1-10 for pain when you live with a chronic illness. Superb article!

  • Karen Vasquez

    Loved it! (Not in an I’m too tired or I can’t see my feet kind of way.)

  • Candy

    Great article! Sending it to my husband right now