My wife has MS

Your Spouse Was Diagnosed With MS. Now What?

A multiple sclerosis (MS) diagnosis can have a profound impact on a marriage.

“When a person in a family is diagnosed with MS, it affects the whole family,” says psychologist Rosalind Kalb, PhD, vice president of the professional resource center at the National Multiple Sclerosis Society. “For the spouse, this is just as much about them as it is about the person they love.”

But while MS has the potential to bring couples closer together, it can also drive them apart.

Learning to communicate about the difficult feelings that come with a diagnosis of chronic illness — such as fear, loss, loneliness, and guilt — is important for both partners to continue to feel connected.

Responding to the Diagnosis

After the diagnosis of any chronic illness, it’s normal for the person diagnosed, and for those close to him or her, to experience the classic feelings of mourning or grief, including denial, anger, bargaining, and depression.

While some people eventually reach a stage of acceptance of the situation, the grieving process often repeats itself throughout the course of the disease as relapses occur, for example, or the disease progresses.

Robby Teer, 37, of Hayden, Alabama, describes the fears an MS relapse brought up for him: “So my wife is six months pregnant with our first son, Li’l Robby, and I wake up blind! Guys who find out they’re having a boy immediately begin to think of throwing a baseball or football, playing basketball, hunting, fishing, and all. I was hitting rock bottom because I thought I’d never be able to do these things with my little boy.”

RELATED: Partners in Marriage — and in MS

Fortunately Teer’s marriage has reached the point of great stability, as he and his wife have learned to live with the unpredictability of MS. Right now, his wife works and Teer stays home to care for their children, a role that he finds very gratifying. “Honestly, the point my wife and I have reached in our marriage can only be described in one word: unbreakable. She’s my rock,” he says. “She’s who I lean on every second of every day.” Teer’s religious beliefs also help him tremendously.

For couples who are struggling following an MS diagnosis, a marital or couples counselor may be able to assist with the transition in the relationship. For some couples, clergy or religious leaders can be helpful.

According to Dr. Kalb, “We all have different coping styles; each partner may have a different approach for dealing with the challenges.” She recommends showing respect for each other’s methods of dealing with MS, and notes that different people will be able to understand the disease and its challenges at different paces.

Dealing With Reactive Depression

It’s not uncommon for a person newly diagnosed with MS, or their spouse, to experience reactive depression following the diagnosis. Reactive depression specifically refers to depression that occurs in reaction to a major stressor.

Depression can occur long after diagnosis as well. It may be caused by the stress that accompanies living with a chronic disease, but it can also be caused by certain medications (notably steroids and interferon) and by the neurological damage caused by MS.

Caregivers — who are frequently spouses — are also susceptible to stress and depression. According to a study published in Rehabilitation Psychology in May 2014, increased severity in MS symptoms corresponded to increased depression in caregivers. The study also found that social support in multiple life domains, such as work, social life, and marriage, reduces depression.

Depression is treatable with antidepressant medication, psychotherapy, and self-help measures, such as getting regular physical activity and finding sources of social and emotional support.

Stress in the Relationship

Just as stress associated with MS can affect a relationship, so can stress within a relationship affect the course of MS.

George Krkljus, 60, from Napa, California, notes that relationship stress affects his MS symptoms. He says, “Noise, heat, colors, scents, fatigue, and fighting with my spouse affect me most.”

Krkljus also notes that “fixed schedules are easier to deal with than random events.”

Managing stress within the relationship and maintaining a regular schedule, if that’s easier for the person with MS, may be areas couples need to work on to keep their marriage running smoothly.

If caregiving responsibilities are too much for a spouse to manage alone, professional paid caregiving can be an option.

Reaching Out for Support

Couples in which one partner has MS do not have to feel that they are alone, and either member can reach out for help. Kalb encourages not only the person with MS to reach out for help and information, but also the spouse. “They need information and support just as much,” she says.

Support is available through the National Multiple Sclerosis Society, both for care partners (online or by phone, 800-344-4867) and for people with MS who would like to talk to others who have it (866-673-7436).

Getting assistance and suggestions from others who have been through a similar experience can be invaluable.

Knowledge is Power

When both partners understand the disease, its symptoms, and how it may progress, they are better prepared to handle the unpredictable nature of MS. Knowledge and awareness are key to reducing fear and anxiety.

Teresa I. Wright-Johnson is a married Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. She was born with a heart murmur and an Aortic Valve Defect. Teresa has endured multiple open heart surgeries and cardiac procedures. She was diagnosed with MS in November of 2014 and is under the care of an esteemed MS Specialist. Teresa knows there is a calling on her life and she fully embraces that. Teresa uses her illnesses as opportunities to further rely on her faith, walk in her truth, raise awareness and educate others. She believes that she is purposely on purpose. Teresa offers a solid background in Criminal Justice and Social Services. A graduate of Rutgers University in New Brunswick, NJ and a retired Sr. Parole Officer for the State of New Jersey, Teresa uses her life to empower and inspire others. She embodies community service, is a member of Zeta Phi Beta Sorority, Inc and is active with several other organizations. Teresa aspires to be a light that shines in dark places. Teresa is an author, poet, inspirational speaker and a community activist. She enjoys writing, reading, listening to music and spending time with her family and friends. Teresa acknowledges the unwavering love of her wonderful parents throughout her life and her supportive and loving husband Marvin who is beside her through every trial and triumph.

When Love and MS Meet: Dating Advice from Those Who Know

There’s a lot to love about falling in love, and while the process of dating someone special is exciting and intoxicating, it can also be filled with uncertainty. There are many stages of getting to know a person and sometimes the path to intimacy includes learning about life with a chronic illness like multiple sclerosis (MS).

MS is most commonly diagnosed between the ages of 20 and 40 — often prime dating years. For those who live with the illness, day-to-day life can be difficult, and dating presents its own set of challenges. As a significant other and potential long-term partner, the best thing you can do is be open, supportive, and informed.

No one knows this better than Dan and Jennifer Digmann. Together, they have taken on MS for over 20 years. Jennifer was diagnosed in 1997; Dan two years later. The two met at a national MS event, discovered a mutual fascination with fantasy football and Bruce Springsteen music, and fell in love. They have been happily married for over a decade. Here’s their advice for dating someone with MS.

So, the cat’s out of the bag and you’ve learned that the person you’re dating has multiple sclerosis. First of all, you should feel honored! The fact that this individual has opened up to you about his or her menacing monster within means you’ve reached a new, trusting stage in your relationship. Now, what’s next?

If you want to know what you can do to continue to build trust and keep your relationship moving forward, here are some tips from a husband and wife who both live with MS.

Late, but not forgotten

Don’t be offended when your date is late. MS often makes getting ready to go out take waaaaay longer than it should.

Give gifts, not challenges

Forget the earrings, necklaces, and ties. A romantic gift for a person with MS should be something that doesn’t require great dexterity.

Netflix and chill means exactly that

Contrary to the phrase’s social slang definition, dating a person with MS means you literally will watch movies and rest, as fatigue is a common MS symptom.

Not tipsy

If your date stumbles after having one drink, it probably has nothing to do with being a lightweight drinker. That’s the MS, which can cause balance and gait issues and effect the way people walk.

Gotta go

Similarly, if your date isn’t interested in one more round of drinks, it’s not because the conversation is boring. It’s more likely the restroom is calling, since bladder issues are common with MS.

It’s fun to eat at 4:30 p.m.

Not that you need the early bird dinner discounts, but be open to starting your night earlier in the evening. Such scheduling helps to battle the MS fatigue.

Live in the now

Shy away from making long-range plans, but if you do, stay flexible. MS is unpredictable and can change within minutes.

Who needs amusement parks?

Check before booking a trip to ride the roller coaster, Scrambler, and Tilt-a-Whirl. People who have MS-related vertigo are already spinning on their own.

Careful with caressing cheeks and long-lasting kisses

Trigeminal neuralgia, aka chronic pain along either cheek, can be caused by MS and can make your magic touch seem more like a flaming torch.

Sometimes they truly just aren’t feeling it

Holding hands is all kinds of loving and romantic, but when your date doesn’t want to or seems somewhat less responsive, chances are his or her hands are either sensitive or just plain numb because of the MS.

It’s not an escape route. It’s a relief route.

Don’t read into it when your date asks to sit closer to the fire door because it will make it easier to walk out on you. The seat is most likely also the closest to the restroom.

Remember you are dating the person, not the person’s disease

Have an interest and curiosity in MS, but stay focused on the qualities that attracted you to the person in the first place.

A ‘hot date’ isn’t always a good thing

Extreme temperatures can have an adverse effect on people living with MS, so it’s best to avoid spa sessions, beach days, or trips down the ski slopes.

Getting lost in their eyes isn’t always good, either

Double vision, eye pain, and blindness also can be associated with MS.

Don’t be a hero

For example, if the person you’re dating is struggling to cut a piece of chicken or zip his or her jacket because of MS-related numbness, sit tight and be alert, but always wait to offer assistance. Few things make a person with MS more upset than when somebody steps in and essentially prevents them from completing a task on their own.

But seriously: You’re interesting too!

Don’t let MS be the focus of your relationship and conversations. You have interesting perspectives and experiences as well.

It’s not contagious

You can’t catch MS from your date, and his or her intermittent itching is not because of infectious bugs or rashes. Sudden scratching could be a side effect of the disease.

Friend with benefits

Such a saying takes on an entirely different meaning the closer your relationship gets to marriage. MS can be an expensive disease to treat, and having health insurance really is a benefit.

Function trumps fashion

No matter what heel heights are ‘en vogue’, flats are fashionably fine for a woman living with MS who struggles to maintain balance with every step she takes (cue the music: The Police circa 1983).

Don’t joke about getting an MS hug

Seriously. It’s not funny. Google it.

Stick ’em up!

Don’t be alarmed if you’re asked to shoot the person you’re dating. Several of the MS disease-modifying drugs are injectable medications, so you may be called to assist with administering a shot.

Honesty is key

Talk about any fears, questions, or concerns you have about MS. Chances are your date has them too. Sharing these conversations makes it feel like you are battling this disease as a team. Teamwork makes the dream work, right?

Say what?

Ask questions if you are curious or confused about anything related to MS. It’s all part of staying honest.

Watch what they eat

Evidence is constantly evolving regarding dietary recommendations and MS. Be supportive and flexible. As science learns more about MS, treatment options and nutritional suggestions change too.

Take a deep breath

Be patient with yourself and the person you’re dating. Life is unpredictable, and so is MS. You can both make it through the ups and downs … together.

Take another deep breath

Exercise is good for everyone. Stay active, stay in shape, and stay committed to an appropriate exercise routine. It can be fun for you and the person you’re dating, and isn’t that what dating is all about?

Access to adventures

Be mindful of fluctuating physical abilities in the person you’re dating, and make sure any of your dating plans will be easily accessible for him or her. Call ahead to double-check that the five-star restaurant is fully handicapped accessible (yes, people in wheelchairs are fun to date!) or that the parking lot doesn’t require long walks from your vehicle to the front door.

Nobody is perfect

Cut the person you’re dating some slack if he or she isn’t up to 100 percent. And don’t be so quick to blame the MS. Bad days happen to everybody, whether or not they are living with a chronic disease.

Just staying in

Believe in the beauty and convenience of take-out and to-go. And, if offered, take restaurants up on the free paper plates and plastic silverware to avoid having to do the dishes.

Believe in free medicine

Trust the healing power of laughter. Life’s too short to be serious all the time.

Foresee your future

Go into the relationship feeling that there could be a future with this person. Believe in yourself and the person you’re dating, and do not give MS more credit or attention than it deserves.

After all, we foresaw our future and we both have MS. Oh yeah, and we just celebrated our 11th wedding anniversary!

Dan and Jennifer Digmann are active in the MS community as public speakers, writers, and advocates. They contribute regularly to their award-winning blog, and are authors of Despite MS, to Spite MS, a collection of personal stories about their life together with multiple sclerosis.

Understanding and Managing Multiple Sclerosis Mood Swings

For example, they may recommend:

  • counseling sessions with a trained mental health expert
  • mood stabilizing drugs
  • anti-anxiety medications
  • antidepressants

Depending on the other medications you take to control your MS symptoms and the progression of your condition, you may be unable to use antidepressants and mood stabilizing drugs. In this case, cognitive behavioral therapy may be an option.

In addition to therapy and medications, you can take several proactive steps to help control your moods. Getting support from others is key. For example:

  • Delegate. If you’re overwhelmed by your daily routine, reduce your stress levels by delegating some tasks to other people. Free yourself from burdens to give yourself more time to relax and focus.
  • Turn to a friend. Confide in a trusted family member or friend about your frustrations, fears, and other feelings. Talking to others can help release your pent-up emotions and stop them from boiling over in the form of a mood swing.
  • Find additional support. Join an MS support group to talk about your thoughts and feelings with other people who are going through a similar experience. Your fellow group members and group leader may also share tips and resources to help you cope.
  • Tell others about your mood swings before they happen. Sometimes worrying about what others think about you can cause enough stress to bring on a mood swing. Letting others know that it’s part of your MS may help ease your mind.

You can also try to increase your sense of calm and peacefulness to reduce your mood swings. For example:

  • Practice yoga or mindful meditation. The calming effects of these activities can help you unwind and focus.
  • Practice deep breathing. Deep breathing can help calm you down and give you an extra moment to take back control when you find yourself in a stressful situation.
  • Think your feelings through. If you pause and examine your feelings objectively, you may be able to reclaim control and realize what’s triggering your emotions.

Finally, staying mentally and physically active may help regulate your mood swings. Physical exercise has been shown to have a positive effect on mental well-being. Besides being good for your body, the time you spend engaged in exercise is a great opportunity for personal reflection.

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