Life with MS

For most people living with multiple sclerosis, it’s easy to talk about the day you were diagnosed, symptoms leading up to your diagnosis, and experiences you’ve had with disease-modifying medicines.

But the conversation can get quite complicated when questions are asked about intimacy and MS. Suddenly your comfort zone is compromised and the discussion is getting too personal. It’s too close, too intimate. No longer is the discussion focused on your individual stories. There’s another person – such as a spouse, partner, or significant other – involved in your MS experience.

Perhaps it’s more accurate to say the conversation about intimacy and MS is two personal. It’s two close, two intimate.

Dictionary.com defines intimacy as, “A close, familiar, and usually affectionate or loving personal relationship with another person or group.” It’s a term that is easily defined, but often MS and its related issues can interfere with the simplest things in life – even kissing.

We barely kissed on the lips during the first eight months of 2014, but we had never felt closer to each other than we did for those 242 passionately kissless days.

It wasn’t as if distance was keeping us apart. We lived, ate, slept, and spent time together the same as any married couple of nine years. But we are living with something that not every other couple lives with – we both have MS.

Technically, it wasn’t the MS that interfered with our passionate kisses. It was that pesky MS-induced trigeminal neuralgia, a relentlessly painful irritation of the trigeminal nerve that Jennifer was experiencing. While only a small percentage of people with MS have TN, those who get it experience it in a very big way.

Jennifer couldn’t brush her teeth without pain, eat sweets without wincing, or sleep soundly without being awakened by a violent sensation of electricity running through her right cheek and molars. Oh yeah, and kissing Dan was about as comfortable as chewing on aluminum foil.

Just like that, the kissing instantly stopped in a married life where we were madly in love. That is, until after Jennifer underwent gamma-knife surgery to remedy the TN. But never once did Dan fear there was trouble in paradise or that Jennifer no longer loved him. Honesty, empathy, listening and patience were keys to weathering this, and every other storm that MS brewed up in the intimate atmosphere of a close relationship.  

We no longer could kiss on the lips, but we soon found new ways to express intimate feelings for each other. Tighter and extended hugs, falling asleep while holding hands, and Dan’s gentle kisses on Jennifer’s forehead were the expressions of love that sustained us. These simple and meaningful acts actually pulled us closer together emotionally than we imagined was ever possible. Maybe it was because each act was rooted in the shared understanding that we are strongest when we’re together in our fight with MS.

Kissing Denied. Intimacy Redefined.

These are opportunities that everyone living with MS has: take control and give new definitions to all that once was familiar about intimacy.

The reality is that intimacy was part of our relationship less than four hours after we first met. We actually were introduced to each other at an MS-related event 12 years ago. We made an instant connection as two younger people living with this chronic disease. And when Jennifer needed her mother’s assistance to use the restroom, it wasn’t weird or creepy when Dan offered to help with the wheelchair transfers. It was a comfortable and kind gesture toward a newfound friend in need.

MS can create physical barriers, such as Jennifer’s wheelchair and Dan’s fatigue, but we’ve learned throughout our marriage that nearly everything is possible when it comes to maintaining an intimate relationship. It’s all about transforming the ideas of intimacy and making them your own.

Jennifer no longer can stand on her own, but we still go dancing. She stays seated in her chair, but we’re holding hands the entire time we boogie — always connected.

When we’re at the baseball game and the seventh inning stretch comes around, Dan helps Jennifer stand as we sing Take Me Out to the Ballgame in a never ending embrace. Such a show of love would seem ripe for receiving a citation for a public display of affection. But we own this intimate moment, and nobody ever will dare take it away.

Notice we haven’t yet mentioned anything about sex. Sure, it’s one of the elements of intimacy in our marriage. But there’s more to intimacy than that, and like everything else, we’ve redefined that to make it our own in light of the disease we share.

As we said before, honesty, empathy, listening, and patience are keys to weathering the storm that MS brews up in the intimate atmosphere of a close relationship.

Combined, Jennifer and Dan Digmann have lived with MS for more than 30 years. Jennifer was diagnosed in 1997 and has secondary progressive MS, and Dan was diagnosed in 2000 with relapsing-remitting. They met at an MS-related event in 2002, fell in love, and got married on Sept. 10, 2005. They have been living happily ever after in Michigan. They are MS activists and regularly present as guest speakers at events nationwide. They wrote the book Despite MS, to Spite MS, and their story is featured in the book written by Ronda Giangreco and Jeanne Lassard, A Dose of Devotion: How Couples Living With Multiple Sclerosis Keep Their Love Strong.