What You Need to Know When Your Partner Has MSby Lisa Emrich Patient Advocate
Multiple sclerosis (MS) is a life-altering condition, and if your partner has it, it is likely to have a significant impact on your life, too. Here are some ways that you can be a supportive partner, while also keeping your relationship and your own well-being intact.
Talk about how the diagnosis makes you both feel
MS is an autoimmune disease that causes symptoms such as weakness, fatigue, balance and coordination issues, numbness/tingling, pain, problems with vision, cognition, or bladder/bowel function, paralysis, and difficulty walking. MS is unpredictable and incurable. You and your partner may experience strong emotions. The challenge may be to share your thoughts and emotions with your partner in a constructive way so that you can begin to face them together. Know that it’s OK to cry, too.
Develop a common language
Become aware of the subtle nuances in the words your partner chooses to describe his/her symptoms or personal challenges. Much can be expressed in few words when a foundation of understanding and shared experiences support the conversation. Something as simple as telling my husband that my face is feeling more numb than usual lets him know that my MS has me feeling rundown. Try to focus on developing and strengthening your relationship in the face of chronic disease.
Expect communication to be a challenge
People with MS may have difficulty expressing themselves. Cognitive changes can make finding specific words more difficult, particularly when emotions are triggered. Depression and anxiety, common symptoms of MS, may interfere with communication. Heat sensitivity can also exacerbate cognitive challenges. Patience with and understanding of these problems are important for both the person with MS and their loved one.
Find ways to help your partner preserve energy
Be mindful of the many small and big tasks that are easy enough for you to do, but which may zap the energy of your partner, potentially reducing the amount of quality time you can enjoy together. And as with any relationship, doing something helpful without being asked is priceless.
Observe the impact of external influences
Begin to notice how certain environmental factors, situations, or other health issues affect your partner as well as yourself. For many people living with MS, heat and acute illness temporarily increase symptoms. Loud and excessively stimulating events can cause sensory overload and be exhausting. Also, one day of strenuous activity may require at least two days of rest and recuperation.
Take care of yourself
Dealing with the effects of a serious chronic disease, such as MS, can be emotionally draining, physically exhausting, overwhelming, and monotonous ... for both of you. Continue to nurture your personal interests as well as those you enjoy together. Watch for signs of depression and caregiver fatigue — and don’t be afraid to ask for help.
Anticipate your partner's needs and avoid pitfalls
If your partner is heat sensitive, check out these cooling strategies and know that the power of ice is almost magical. Walking long distances can increase risk of falls and fatigue. Take the time to circle the block one more time and drop your partner off at the door of your destination before parking the vehicle. Also, be extra cautious once fatigue sets in as the risk of hazards increases.
Keep tabs on your partner's whole health, not just the MS
Realize that MS will not be responsible for every single health problem your partner may experience. Just because someone has MS doesn’t exempt him/her from developing other health issues. Continue with routine health screenings and seek medical treatment for acute illness. Be aware, however, that a combination of illnesses may increase the challenges associated with MS.
Weather the highs and lows of a journey with MS
Be patient with and supportive of each other. There will be good days and bad days, and all sorts of days in between. Remember that support comes in many forms: physical, emotional, financial, social, spiritual, and more. Patience, support, communication, and empathy will help you and your partner navigate the ups and downs of life with MS.