Sunday, December 4, 2011

Secret Post #7: Let's Talk About Sex, Baby

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

 This Post Written June 27, 2011
TMI Warning: This post contains details about sex and trying to get pregnant that you may consider to be too much information. Don't say I didn't warn you!

No matter how long I have been off my meds to prepare my body for pregnancy, to get pregnant I still have to have sex with my husband. That part is not rocket science. However, sometimes figuring out how to have sex while dealing with untreated RA feels a lot like rocket science. My knees hurts, my hips hurt, my jaw hurts, my fingers hurt, my mobility is limited, my body is stiff, I'm fatigued, I don't feel particularly sexy, and to top it all off, I feel guilty and frustrated about all of those things!! A girl could use a little help and advice!!

But have you ever Googled "sex and RA" looking for advice?

I have.

I really don't recommend it.

Unfortunately, the vast majority of the articles out there addressing the topic of sex and RA are seriously depressing. In order to weed out any potentially useful information or advice you have to wade through multiple paragraphs of horrendous facts and statistics about how likely your sex life is to suck after getting diagnosed with RA. In fact, it is shocking how often these depressing facts are repeated without offering much advice for how to overcome them. Facts such as:
  • If you have RA, enjoying sex is "likely to be difficult" and you may need to reduce your expectations of your sex life.
  • Studies show that RA substantially diminishes the sex lives of 1 in 3 patients, and 1 in 10 say sex is out of the question. 
  • People with RA can have poor self image - from joint deformities, weight gain, facial swelling (moon face), hair loss, depression, reduced libido, lack of endurance, medication-related vaginal dryness, etc. - which can seriously damage their sex lives. 
  • The healthy partner is often afraid to initiate due to a fear of hurting the person with RA or being rejected, while the partner with RA often feels guilty about "holding back" their healthy partner. This promotes feelings of insecurity and anxiety, which only worsens the problem.
I'm sorry, did you just say that 10% of people with RA don't have sex at all?!?! (Actually, I found a French study where the number was 40% and an English survey where the number was 50%!!)  Also, thanks for that all-inclusive list of every single hurdle I have to overcome to feel sexy - I had actually managed to forget about a few of those and I truly appreciate being reminded!! I even found one article where a woman blamed her pending divorce solely on the impact her RA had on their sex life, and another article that said 85% of marriages faced with the challenges of chronic illnesses eventually fail.

And the advice that is most often given to fix these horrendous issues?
  • Find other ways to feel satisfied and intimate besides intercourse: synchronized breathing, eye gazing, fantasizing, guided imagery, visual stimulation, holding hands, hugging, cuddling, touching, kissing, sensual massage, oral contact, stroking, fondling...
While I appreciate that there are important types of intimacy besides intercourse, a lot of the articles sound like they are telling you to give up on intercourse all together! And that's a problem for me, because I'm pretty sure I can't get pregnant from holding hands!

Reading these articles is enough to make you want to crawl under a rock and cry. Or possibly die. My point is - they are not exactly uplifting.

And, although there are quite a few useful articles (and a great book) about pregnancy and RA, surprisingly those resources don't give much advice at all on how on earth you are supposed to get pregnant in the first place! I'm have no idea why they skip that step - it seems pretty relevant to me!!

Thus, I have embarked upon a quest to read as many articles about sex and RA as I can stomach. I will then weed out all the horrifying and depressing statistics, and compile a list of actual useful and hopeful advice from experts on improving your sex life when you have RA. It will be in my next post!


    Heather said...

    "I'm pretty sure you can't get pregnant from holding hands!"

    Best line ever.

    Yeah, when I was diagnosed, I was definitely discouraged by the articles on sex and RA. I understand, but you've got to get past it somehow if you want your marriage to succeed. While I'm pretty sure my husband wouldn't leave me if we just stopped having sex, I'm am sure he would NOT be happy. I've learned to take advantage of good days - and he's learned not to bother me on bad ones.

    ~Mariah~ said...

    HEATHER: I'm pretty sure. ~;o) But, yeah, you for sure have to find a way to get past it - and we've had 3 years to work on that - but trying to conceive puts an extra layer of stress on what can already be a stressful situation. I was just so frustrated that most of the "information" out there about sex and RA was so negative - SO MANY ARTICLES just recited horrible facts without offering any help whatsoever!! I just don't think it's fair or useful for people looking for help.

    Stephanie Kay said...

    "synchronized breathing, eye gazing" - That made me laugh out loud, for real. I'm not sure how synchronized breathing is supposed to make me feel close to my husband and as for eye gazing, I'm not 16 and mooning over a boy.

    Honestly, it never occurred to me that I wouldn't be able to have sex because of RA. Maybe I'm just naive. My husband and I have found positions, frequency, etc. that work for us. Sometimes it's less often than he wants and more often than I want but that's like anything else in marriage - you compromise.

    As for the woman getting a divorce because of it, that sounds like a pitiful excuse to me. After 14 years of marriage, and all of them with RA, I'd say there was a lot more involved in the break down of the relationship than RA and sex. But that's just my opinion. :)

    Skye said...

    Hi so I want to read all the secret posts about your experience as I'm currently 9 weeks pregnant and came off mtx back in June. I'm currently having flares every morning or sometimes at night being winter doesn't help :( doing the best I can to deal with it as the rheumy says I should feel some relief by the second trimester. Did you?

    Skye said...

    Oh I should add I have been advised to take a low dose of prednisone but I'm taking it as needed :/ which I don't think makes much of a difference :( can you email me I'm not sure how far along you are but I think it'd be nice to have someone to compare notes with :)

    ~Mariah~ said...

    STEPHANIE: I am certainly not arguing that any of the facts/statistics in this post are actually true! My point is that if you are legitimately struggling and looking for help/advice on the subject, what you are instead likely to find is all that depressing nonsense. And that can be really discouraging - especially in a situation where it can seem hard to ask for help in the first place. I just think it is wrong that SO MANY of those articles contain negative stories and statistics and so few of them contain positive, uplifting, hopeful advice on how to make it better.

    SKYE: First of all, congratulations!! How exciting! Second, I'm really glad you are finding these secret posts useful. I've got 12 more, so I will get them posted over the next 12 days. ~;o) I'm sorry to hear that you are having flares - for me the worst part so far has been the morning sickness and the EXTREME fatigue. I'm actually only at 12 weeks, so I'm not quite into my second trimester yet - but everyone assures me it will get better then! Right now I am on my way out the door, but I will shoot you an email this afternoon. And you can also always shoot me a message at if you've got stuff you don't want to share publicly. ~;o)