Life with MS

When we hear the word intimacy, most automatically associate it with sexual relationships. One concern for those living with MS is how will MS affect my sex life? As I climb into my mid-40s, I am now struggling with the question of whether it is MS affecting my sex life, or is it aging?

I was diagnosed with MS in 2005 at 28 years old. I had been married to my wife for only three years and became nonfunctional from the waist down. Not only was I unable to walk and my legs were numb, but I was unable to go to the bathroom on my own and had numbness in my privates. I had to use a catheter to urinate, and I cannot recall having an erection for many months after my diagnosis. I became depressed and began to think the intimate part of my life was over.

My ability to walk returned long before my ability to perform in the bedroom. In my deepest darkest moments, I thought I was never going to be able to have children. At just 28, I was completely devastated and had never experienced anything like this before. I was scared, depressed, and worst of all, I was too embarrassed to talk to anyone about it - not even my doctor - so I suffered in silence.

Then one day, I awoke and like magic, everything seemed to return back to normal. I don't know if I was overcome with joy or relief, but once it happened, the fear, the shame, and embarrassment disappeared. In hindsight, I wish I had talked to a doctor about it to see if there was anything I could have done to make it better. However, at the time, I was just learning how to live with a chronic disease. Those conversations were too hard, especially if the doctor or medical assistant in the room was the opposite sex.

When I say everything went back to normal, my functionality returned and we welcomed our first son in 2007 and our second son in 2009. When my first son was born, that was two years after my diagnosis, so I felt that I was all the way back. Fast forward 16 years later and intimacy is being affected again. This time I am having trouble deciding whether it is MS, aging, or both.

Physically, everything is still functioning properly. There is no numbness in the private area or in the legs, that resolved a long time ago. The problem I am having is more to do with fatigue and the desire to be intimate. And to be more specific, the desire to be intimate does not have to do with my wife, but rather my lack of sex drive. 

Our kids are now 14 and 12, so by the time we are done taking them to their sports or friend activities, I am exhausted. I typically go to bed between 8-8:30 on any given night. Food also makes me feel bloated and unattractive, so being intimate after a meal, on any anniversary or special occasion, is something I wouldn't initiate because of how I feel about myself. I have been to a lot of MS support groups and found that other people living with MS are having similar experiences in the bedroom.

Most of the people that I talk to at these support groups tend to be around my age, so I am not able to answer the question about whether MS is the culprit or if getting older is affecting my desire to be intimate. If you are struggling with similar issues, here is what has worked for me.

1. Communicate with your partner. 

Problems with intimacy can be MS-related, aging-related, or from some other cause. But it is important to tell your partner that it is not them. Let them know how you are feeling and they will try to help the best they can. You may also communicate times of the day where you feel more comfortable and able to be intimate.

Let them know this is an important part of life and you will try to work through it. You are a team, and teammates help each other even if it isn't the most comfortable thing to talk about. If you have a hard time intiating this conversation, leave a note or send a text saying you are having trouble with intimacy and having a hard time talking about it. That will get the conversation going. 

2. Seek medical advice.

Even though the conversation can be uncomfortable, talk to your doctor about any issues with intimacy. Your doctor should be your trusted partner in care, and you should be able to talk about everything, including if you are having trouble in the bedroom. If you cannot have these conversations with your doctor, it may be time to find a doctor with whom you feel more comfortable sharing your concerns. 

3. Don't think about it, try to relax.

The thing about any kind of issue is that the more you think about it, the harder it becomes to get over it. This is a natural act you have done many times. Relax, don't think about it and let it happen naturally. If you try too hard, it may not work and you may get frustrated and eventually stop trying. 

4. If at first you don't succeed, try, try again.

Once you have communicated the desire to regain your intimacy, let your partner know that it may take some practice. If the moment becomes intimate,  but not everything is working right, let your partner know you are still struggling and while this time may not be right, you want to try again. By working together, you can overcome this.