Author
Roz Kalb , Psychologist
Your Guide to MS
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9 Feb 2024 | ~11:02 Engagement Time
Special thanks to our sponsor, EMD Serono.
Multiple sclerosis is a chronic, unpredictable disease of the brain and spinal cord (or central nervous system) where the immune system mistakenly attacks healthy cells and tissues. This causes inflammation and damage, resulting in spasticity, fatigue, balance issues, and other symptoms.
There are many things to consider when dating someone new. Dating someone with MS adds a few wrinkles that may raise some questions for you. As you read this article, remember that MS is just one piece of this person’s story.
When you date someone with MS, understand they may still be adjusting to their diagnosis. Exploring ways to incorporate it into their self-image, accepting the changes MS has already caused in their life, and looking for ways to continue doing what’s important to them. All the while, they are trying to manage their health and wellness. MS is part of who they are but is not the only or most important part.
While there is much about MS we still don’t understand, there are some key facts to keep in mind.
No two people experience MS in exactly the same way. Since the damage occurs randomly in the CNS, each person’s symptoms are unique. The symptoms can be visible, like:
Symptoms might also be invisible or not obvious when you are first dating someone with MS. For example:
A person may have many symptoms over their lifetime or only a few. Symptoms can fluctuate from one hour, day, month, or year to the next. This unpredictability is one of the greatest challenges for people living with MS – and for the people who care about them.
Most people are initially diagnosed with a relapsing-remitting MS. This means that they experience acute episodes of neurologic damage (called relapses, attacks, or exacerbations) that last from several weeks to months. This is then followed by a gradual remission, during which the symptoms completely or partially resolve.
Around half of these individuals will develop secondary-progressive MS, which is characterized by slow progression with few or no relapses.
Approximately 15% of people are diagnosed with primary-progressive MS, which means that their MS gradually worsens from the start, with minimal or no relapses.
Currently, we have more than 20 medications that reduce disease activity in people with MS and delay disease progression. They differ in strength, efficacy, side effects, risks, and how they work in the body. This means that people have many options to consider with their neurology provider.
Early and ongoing treatment is the best insurance for the future. Other elements of comprehensive care include rehabilitation (physical and occupational therapy, speech-language therapy, cognitive remediation), mental health services, and careful attention to the person’s overall health and wellness. As a result, most people with MS can live full, active, and independent lives.
Getting educated – like you’re doing right now – will address many of your questions and concerns. While heading into a relationship with blinders on might seem care-free, romantic, and exciting, you and the person you are dating will have smoother sailing throughout your relationship if you learn together and talk about it as you go.
Communication is your most important tool when dating someone with MS. So much of MS is invisible and unpredictable, so don’t just try to guess what’s going on. Ask questions rather than jumping to conclusions if you don’t understand something. Some topics are easier to talk about than others. If the person you are dating is OK with it, you can accompany them to neurology appointments to ask any questions you may have. MS advocacy organizations offer articles, podcasts and videos to jumpstart conversations about virtually any challenge you could imagine. Here are just a few to check out
Whether it’s changes in sexual responses or overpowering MS fatigue, you don’t need to navigate these challenges and uncertainties on your own.
Be ready to flex – and always have a Plan B. The unpredictability of MS symptoms means that plans may change on a dime. Social events, date nights, recreational activities, errands, and shared projects of any kind may be disrupted by an uptick in symptoms – particularly fatigue or pain. Being ready to shift or postpone plans is just part of living and dating with MS. Approaching these changes with understanding will help you and your partner. Remember, they are probably feeling frustrated or sad about the change in plans, too.
Virtually all activities can be adapted to conserve energy and make them less tiring and safer, including exercise and physical activity, sports, travel, and driving, to name a few. Being open to doing things differently or trying new things is the key to keeping your dating life exciting and fun.
When starting a new sexual relationship, it is common to face different challenges along the way. However, when dating someone with MS, it is important to understand how their disease may interfere with their sex life. Multiple sclerosis can cause changes in a person’s interest level, arousal, physical sensations, and ability to achieve orgasm.
Jumping to conclusions about what’s going on can lead to confusion, frustration, and hurt feelings. “Maybe they don’t find me attractive…maybe I’m doing something wrong…” can lead you down an incorrect path. If you’re not sure what’s happening, ask. Be open, supportive, and willing to learn. Ask about what feels good and what doesn’t, and be open to positions, toys, and strategies you may not have thought about before. Keep learning.
Dating someone with MS may present some challenges you’ve never experienced or even thought about before. But the communication and mutual caring that an unpredictable disease like MS requires can also create feelings of trust, intimacy, and partnership that are stronger than you imagined possible. As we said at the beginning, MS is just one part of the person you are dating and definitely not the most important part.
