Dating or living with someone with MS

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Two of the most common symptoms of MS are fatigue and movement issues. Both of these can affect a person’s ability to engage in certain activities, such as going for walks, seeing a movie, or having dinner in a restaurant.

An individual’s physical ability can vary depending on the type of MS they have, the stage of the disease, and their symptoms on any given day. People with MS can experience:

• tremors
• dizziness or vertigo
• loss of balance
• instability while walking, or ataxia
• limb clumsiness
• involuntary muscle spasms
• stiffness or tightness of muscles
• muscle weakness

Any of these symptoms can make it more difficult or uncomfortable to move around.

Many people with MS also experience fatigue. With this in mind, it is important to understand that fatigue is different from normal tiredness. While tiredness can occur after exercise or having a busy day, fatigue means a person has less energy than normal at the start of the day. It may make someone feel heavy, weak, unable to move, or that they have no energy.

It may be difficult for an individual with MS to describe how this feels to someone who has not experienced this symptom. However, this does not make it any less real. Fatigue can affect people mentally as well as physically, which may make thought-intensive or complicated activities more difficult.

Individuals who are dating or in a relationship with someone with MS need to bear this in mind when making plans to spend time together. This may mean:

• Listening to them: People with MS have the best understanding of their symptoms and how they impact their daily life. As a result, it is important to listen to what they say they need.
• Adopting a “less is more” approach: At times when a person’s symptoms prevent them from performing physical activities, it can help by focusing on simple pleasures instead. Suggest activities that do not require much energy or physical movement. For example, instead of going to a movie theater, plan a movie night at home.
• Being adaptable: Although a person with MS may not want their disease to dictate their lives, their partners should be adaptable to changing plans. MS can be unpredictable and may require someone to postpone or alter scheduled activities.
• Being patient: If someone has symptoms that affect coordination or cognition, they may move, think, or speak more slowly than usual. Be patient and offer them time to do things at their pace.

Additionally, on particularly hot or humid days, people with MS may have even more difficulty with symptoms, so a person may wish to factor in the weather before planning certain activities for individuals with the condition.

MS affects everyone differently. However, for many, the diagnosis and living with the condition are emotionally challenging.

People with MS may have feelings of grief about their diagnosis. They can also experience anxiety and worry about their symptoms or the progression of the condition or develop depression.

Sometimes, the changes that MS causes in the brain can result in mood changes. An uncommon example is the pseudobulbar affect, which around 10% of individuals with MS experience. People with this condition experience a disconnect between how they feel and how they express their emotions. For example, they may laugh even though they do not find something funny.

Partners can be sensitive to the impact MS has on mental health by:

• Talking when they are ready: If someone has recently disclosed their MS diagnosis or has only just received it, they may not be prepared to talk about it yet. Do not put pressure on someone to talk about their condition if they are not ready. Instead, make it clear that if or when they are ready, they have someone who will listen.
• Maintaining normality: While MS may require sizable adjustments and accommodations, it is important not to treat a person with the condition as though they cannot do things for themselves — this can feel disempowering or even patronizing. Help maintain a sense of normalcy wherever possible by offering support only when a person needs it.
• Avoiding “toxic positivity”: Toxic positivity refers to the idea that individuals should strive to be positive all the time, even in situations that would normally make someone sad or angry. This idea creates pressure for people to mask how they really feel. While it can be helpful to look for positives in difficult situations, it is also important to acknowledge those difficulties and talk honestly about them.
• Supporting someone in seeking help: If someone with MS is struggling with anxiety, depression, or any other mental health concern, they may consider talking to a doctor or therapist. If they do decide to do this, try to support them through the process, but do not pressure them if they are not ready.
• Active listening: Active listening is when individuals allow the other person to talk freely and openly without attempting to solve the problem or offer suggestions or unsolicited advice. Instead, respond with statements such as “that sounds really difficult” or “you have been through a lot lately.” Rather than offering advice, ask questions, such as “what do you think would work best?” or “what advice would you give me if I were in your shoes?”

Not everyone with MS will experience problems with sex or intimacy. However, it can have an effect mentally or physically on this aspect of relationships. MS can contribute to intimacy problems due to:

• changes to the nervous system that alter sexual function or sensation
• physical symptoms that indirectly affect sex, such as fatigue or muscle weakness
• emotional factors, such as performance anxiety, body image concerns, or self-esteem
• relationship difficulties, such as problems communicating about sex honestly

People with MS retain the ability to give and receive pleasure, but people in sexual relationships may need to adapt and use creative problem-solving to overcome some obstacles. They may also need to examine their own beliefs, as individuals may assume that having a disability means they cannot be a sexual person.

To help resolve these issues, people can try:

• Talking openly: Some individuals can find it uncomfortable to talk about sex, but it is important to do so, particularly when a partner has a condition such as MS. Communicate any concerns or worries and listen to theirs without judgment.
• Seeking expert advice: People may wish to speak with a doctor, sexual health nurse, or sex therapist to understand how MS can affect sex and the ways to work around the changes it may bring. Individuals in relationships may wish to attend appointments together so they can both benefit.
• Trying different positions and techniques: Some sex positions and techniques may be more suitable for people with MS than others. For example, someone with fatigue may prefer low-energy positions, while a person who experiences vaginal dryness due to MS may benefit from using lubricant. Work together to try out different approaches.

Dating someone with MS, or being in a relationship with them, can be a source of happiness and contentment. However, the condition can also be challenging, meaning people may need to adapt their approach to spending quality time together, intimacy, and maintaining an emotional connection.

Being patient, adaptable, and supportive is essential for partners of individuals with MS. People with the condition can also help by advocating for their needs as best they can.