Autoimmune Disease and Intimacy {Updated}
Original post written in 2012. I've updated a few things.
It comes with much trepidation that I write this blog post. This topic is very personal, very autobiographical and not something I take lightly. I'm a very private person when it comes to intimacy so this is difficult to share. However, the more I thought about it, the more I realized how discussing this topic might help others with an autoimmune disease and intimacy issues. Perhaps sharing my struggles and how I overcame them can help others who similarly struggle. FINE PRINT I'm really putting myself out there, way past my comfort zone. Judging me would be, well, uncool. And please keep in mind, this post is written with certain criteria in mind: married, autoimmune disease, and of course, being adults. Marriage before sex, people. And also, if you a minor, family or acquaintance (do I really have to look you in the eye when shopping at the grocery store?!), move on to another website, please. This post is not for you. When I talk about MS (multiple sclerosis), feel free to replace the word with what autoimmune issue you are personally dealing with. This post and topic relate to all autoimmune diseases - after all, they equally zap our bodies into fatigue submission. WHY THIS TOPIC IS IMPORTANT? I remember coming home after hearing the diagnosis. When I turned to the computer, the first websites I came across were basic ones. What is MS? What are the symptoms? What does life with MS look like? I remember seeing the words ‘sexual dysfunction’ and ‘decreased libido’ pop off the screen. Surely, this is not and will not be me, I thought to myself. In subsequent months and years (when my health was not good), when asked by my neurologist to list all of my symptoms, I always skipped past the "sex" questions. None of the doctors’ beeswax. And I'm (we're) fine, thankyouverymuch. But were we? The simple fact was, no, we were not. Denial is a powerful thing. At the time of my diagnosis (4 yrs ago), I had invested 7 years of my life to an amazing man who had loved me through thick and thin, health and sickness. I didn't want to spend the rest of my life in a sexual rut just because of this lame disease. The issue went ignored, until it couldn't be ignored any longer. In all that I've read about MS, there is very little written about overcoming decreased libido and intimacy issues (aside from popping pills, and you all know how I feel about that!). Surely there are plenty of books, sites and doctors that will tell you experiencing those issues are normal. Does that mean that because a symptom is normal and expected given a certain health condition, that one must accept it and move on? For me, no. Not when it came to sex. We all know that intimacy is important in marriage. No, not just important -- essential.
With an autoimmune disease, it's tough to know what is a symptom and what is just part of normal life. Case in point, I have three young children. Was my extreme fatigue just a byproduct of nursing a baby, lack of sleep, running a household, chasing after three kids 4 and under? (That was me in 2009, right in the middle of my worst health.) I'm sure that it was, but you see, the fatigue never got better. Day after day, I wanted to fall apart at the seams once my husband came home from work. Here he was, my knight in shining armor who could take everything over while I collapsed on the couch. I was that sick and tired.
Our family circumstance, coupled with health, was almost too much to bear. And my husband was patient. Until he wasn't. It got hard for him, too. And after a while, I believe that he wanted to fall apart at the seams, and nearly did. Life as the care giver of a loved one with an incurable, chronic disease is a tough calling. At that point, life was all about children, everyday responsibilities and MS. Very little, if nothing, was about husband and wife. My poor husband was neglected and I was in survival mode. You see, the problem was not what happened after the desire and energy were present. The problem was getting across that enormous chasm that connected Point A to Point B. Point A being utter exhaustion and lack of desire. Point B being, well you know, ready and willing. Anyone with a health issue where fatigue is a pressing factor can attest to this problem. THAT type of fatigue is not just physical. It’s mental, emotional and I can’t-think-straight fatigue. Intimacy is difficult to acknowledge when your body is in that state.
In spite of my health, I wanted to remain desirable to my husband. I wanted to feel close to him. To continue that relationship of oneness. And for him? Well, men have their needs. This was a very frustrating time for him, for both of us. And let’s face it, when you are experiencing nerve damage in various parts of your body and inflammatory symptoms, the last thing on your mind is SEX. Even when the MS symptoms were at bay, the fatigue was enough to extinguish the flame. Sex became a chore, a checklist item that had to be completed ever so often. A means to an end and that end was merely to please my husband. That is no way to live a life, my friends. Not a productive, happy, married life, anyway. THE ANSWER Ready for this? There is HOPE. Hope for a strong, healthy, enjoyable sex life beyond a diagnosis. The primary way to do this is to get your energy and health back! No amount of ‘toys’, role playing, positions, creative dating and all that the self-help guides like to glorify will help if there is no energy to implement them.
No. 1 FIND THE RIGHT DOCTOR
This has probably been the leading cause of improvement for me. I found a functional medicine doctor and nurse practitioner that helped me get to the root cause of the MS symptoms I was experiencing. All that I've done can be saved for another blog post at another time, but related to the intimacy department, getting my hormones back in balance was HUGE. I was shocked how whacked out my thyroid and progesterone hormones were. It's taken some experimenting, but I think I'm finally back in balance.
If you're in the Dallas area, I highly recommend Dr. Jerry Tennant and Amy Marshall of the Tennant Institute.
No. 2 DIET I’ve harped on this issue again and again. In the end, it really comes down to what we fuel our bodies with. In those early days with MS, I was still eating the very foods that led me down the path to destructive health. They were the same foods that were causing an inflammatory response, nerve damage and that terrible, horrible, no-good, very-bad fatigue. Simple answer? A grain/dairy/refined-sugar free diet. The closer you can adhere to this diet plan, the better you will feel. The more your energy (and libido!) will reappear. It is so important to get your vitamins and minerals through your daily diet, rather than relying on supplements. Not sure where to start and need recipes? Check out my pinterest boards where I post some of my favorite healthy recipes. There are so many advantages to this diet, the benefits are ridiculous. Besides having your energy reappear and various ailments disappear, you will lose weight. Weight comes off without even trying, without being hungry. In my experience, weight loss made a huge impact in my self image. When you feel sexy, well....it helps. Foods that boost libido: avocado, asparagus, banana, figs, basil, celery, good-quality very dark chocolate. No. 3 EXERCISE You don’t need to be a marathon runner or exercise for hours a day. Just a mere 30 minutes, four-to-five times per week really makes a difference. Sometimes people over think exercise. They think if they can't do P90X-type workouts everyday, then what's the point? Keep it simple. Those much-needed endorphins are released. Again, self image is vastly improved. And that energy is boosted even more.
And last I checked, sex is exercise!
No. 4 COMMUNICATION
MS is one of those diseases where most people walk around, looking like completely normal, healthy individuals. But on the inside, they could be hurting and struggling terribly. It’s not something you generally wear on your sleeve, unless you’re using a cane or in a wheelchair. Your spouse can’t read your mind. How will they know if you are having a bad ‘MS’ day unless you tell them? When it comes to intimacy, how easy it is to feel rejected when the answer is simply no, not tonight? However, the situation completely changes from one of rejection to empathy when the partner communicates, “I’m having a bad MS day. This is how I’m feeling.” Understanding ensues. The frustration may remain, but at least the lines of communication are open and honest. I used to think that keeping my MS issues to myself were important as not to come across as a complainer to my husband. I didn’t want to burden him further. It took time to realize that the opposite was true. It is one thing to complain about a problem and quite another to be open and forthcoming about how you are feeling and dealing with your health. Talk about how MS is affecting your sex life with your partner and don’t be like I used to be -- in denial about it. As diet and exercise take time to implement and see changes, stick with it. It's taken me 4 years to get to where I am now, so I understand that it's not an overnight process. Don't feel overwhelmed. It's a journey. In waiting for the diet, exercise and natural healing efforts to start working, there are things you can do now: No. 5 SCHEDULE Schedule sex. I know this sounds the opposite of spontaneity and romance, but really, scheduled sex is better than no sex. There is something about having it on the calendar helps to get you in the right frame of mind. You know it’s coming, you think about it, you expect it. Your partner is not wondering if/when and isn’t disappointed because their hopes are shattered. Talk with your partner and figure out where it fits into the week. Mon/Wed/Fri/Sat or Tues/Thurs/Sun? If it’s not happening on its own, a schedule can help.
No. 6 IMAGINATION The idea of something new and exciting can pique the interest level. Don’t be afraid to fantasize and then work to make those things come true, within your husband/wife boundaries. Need some help moving that rusty wheel of imagination? This site illustrates different positions by computer generated models, not real people. As such, I personally feel comfortable sharing this as I don't view this as pornography. I would also suggest viewing the site together as husband and wife so you can discuss it, rather than view on your own. - http://www.sexinfo101.com/sp_index.shtml
No. 7 BONUS IDEA FROM MY HUSBAND Take some of the burden off your spouse by serving them. Cook dinner, help clean the house, put the kids to bed, rub their feet, give a massage, surprise them. That help may lead to increased energy for sex, but don’t be disappointed if it doesn’t happen. If it does, fantastic. If not, well, at least you did something nice for your spouse to show your love for them. *Note from wife: Watching your husband cook is very sexy :)
Questions? Thoughts? I’m interested in hearing what has worked for you. Don’t be afraid to talk about it. Don’t ignore this important part of your life together as husband and wife. And I'm happy to say that after 11.5 years of marriage (and going strong!) we are better and closer than ever.
Update in 2017:
I can honestly say I'm the healthiest I've felt since my diagnosis. Fatigue is no longer an ongoing issue for me - only if I fall off the wagon and don't eat well. My husband and I will celebrate 17 years of marriage at the end of this year and we are exceptionally happy and doing very well. I can say with confidence that MS has no bearing on our intimacy.
I can also say with confidence that it is possible to fall in love with your spouse over and over. It takes work, thought and effort, but regular dates, romantic gestures, planning things to look forward to with your spouse all help ignite that spark. I love this blog post from one of my favorite authors, Richard Paul Evans, and what he said about his marriage of 30 years. I encourage everyone to read it: How I Saved My Marriage. Can you imagine if we all asked our spouses every day, “What can I do to make your day better?”
RESOURCES: Marriage Builders (website) - http://www.marriagebuilders.com
LDS Marriage Bed (blog) - http://ldsmarriagebed.blogspot.com/ While this is written and referenced from an LDS (member of The Church of Jesus Christ of Latter-day Saints) perspective, it is still very relevant and helpful to anyone seeking a healthy and fulfilling married sex life. Is your lost libido due to medications you are taking? (video)- http://www.sexsmartfilms.com/free-videos/libido-lost/ And They Were Not Ashamed: Strengthening Marriage through Sexual Fulfillment (book) - A fantastic book from an LDS (Mormon) perspective. There is also a kindle version (which I own), that I'd be happy to lend to anyone who asks. Boost Your Libido (article from Experience Life Magazine) - http://experiencelife.com/article/boost-your-libido/ The Marriage Bed (blog) - http://site.themarriagebed.com/ Sex After Kids (blog post) - http://momlifetoday.com/2011/02/sex-after-kids-11-not-so-quickie-ideas/ Take care, friends. xox. c
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