It can be tough watching loved ones change through the years. For the friends and family of someone with multiple sclerosis (MS), reactions to diagnosis and disease course or progression can range from being confused or heartbroken to accepting and compassionate.
Anticipating the added stress that MS can place on your relationships may help you prepare and find solutions. Collaborating with those you care about can ease their adjustment to accept your diagnosis. With a little extra understanding on both sides, it’s possible to transform strained relationships into those that are supportive.
Several members of MyMSTeam wonder how their diagnosis will affect personal and intimate relationships. One member asked, “How do you avoid having an expectancy for your significant other knowing that they cannot possibly know how it feels to be in your shoes?” If you have similar questions, here are some tips for maintaining healthy relationships with MS, as well as what real-life strategies have worked for members.
Explaining your MS symptoms to others can sometimes feel like a burden. However, it’s not fair to expect others to know everything about MS. Rather than taking on the entire task of educating others, gather a few go-to resources that you can easily pass along when needed.
A documentary, blog, website, book, or pamphlet from your doctor’s office can give others a better understanding of what you’re going through to help build empathy and connection. If your loved ones are educated on the reasons why you need to take an afternoon nap or sometimes slur your words, they may be less judgmental and you may avoid unfair criticism.
When you have MS, friends and family may not understand why your behavior or mood changes or why certain tasks are more difficult than they used to be. Others may assume you’re depressed, angry, or upset with them, which can lead to defensiveness or criticism. Be honest with yourself and others. Don’t hide your symptoms and emotions.
Instead of leaving space for assumptions and conflict, give others a heads-up about your needs so they have a chance to show support.
If you have trouble explaining your emotions to friends or family members, consider writing down your thoughts instead. Shaping your feelings into words gives you a chance to reflect and gain a deeper understanding of yourself. If you want, you can pass along this information in a composed format without fear of being interrupted or saying the wrong thing in the heat of the moment. Research also suggests that writing down your thoughts and feelings makes you more likely to reach out for social support, even if your writing remains private to you.
Your friends and family may become resentful if their role shifts from companionship to caregiving unexpectedly. Although it’s fair to rely on others for moral support and a helping hand, you don’t want your loved ones to feel like they’re being taken for granted.
It may help to involve a counselor or trusted religious leader to help mediate difficult or emotional conversations around these issues. There is also generally more than one way to compromise on expectations. If you need extra help with regular activities (like grocery shopping or running errands), see if you can seek an outside caregiver rather than assuming your loved ones are always available. Maintain a healthy balance in your relationships by showing gratitude and offering to return the favor with monetary payment or by doing something within your abilities to assist the other person.
When you need a break from the added stress of MS on relationships, try taking a step back and take a moment to yourself to recoup, members suggest. “I find that I enjoy my own company and can get lost inside myself,” said one member. “I can create a warm place where everything is better, if only for a short time to draw strength from it.”
Everyone needs a break from social pressures from time to time. With MS, those much-needed breaks may need to be a little more frequent or purposeful. Spending some time in nature, listening to music, watching a movie, or reading a book can give you a moment to yourself. Consider yoga, acupuncture, or reflexology as proactive coping strategies to maintain your well-being.
As much as you should be understanding and patient as loved ones come to terms with MS, there’s no need to excuse disrespect. If the people close to you have unrealistic expectations or put down your character because of MS-related symptoms, it’s important to set the record straight and set boundaries.
If you don’t feel comfortable answering a question about MS, or if you feel someone is attacking you for things that are out of your control, it’s OK to take a step back from that person. When strategies like proactive communication and sharing resources seem to fall on deaf ears, you may need to accept the limitations of the people you care about.
Everyone comes to terms with the impact of chronic illness on their own time. Although you want to partner with others to maintain functional relationships, you shouldn’t feel like you’re doing all the work. If getting together with a particular person or group of people feels more draining than it’s worth, limit the amount of time you spend with them. Part of managing MS includes protecting your emotional and mental health for a good quality of life.
An MS diagnosis doesn’t need to downgrade your social life. Sometimes, chronic diseases deepen our connections with others and add greater meaning to close relationships. One MyMSTeam member explains how MS contributes to meaning in her marriage: “I met my husband post-MS diagnosis, post cane. He is an amazingly caring individual who accepts me (warts and all). We make it work!” she said.
Others echo similar sentiments about the silver lining of the impact of MS. “I've dealt with serious health issues my whole life. I think that these experiences probably made me more empathetic and understanding to anything health-related, especially to someone I love,” one member said. “In a weird way, it actually makes us closer.”
Although changes may take some getting used to, don’t be surprised if certain relationships are strengthened through the lens of living with MS.
Focusing your energy on those who lift you up and offer acceptance rather than those who leave you feeling upset or invalidated can help you stay in good spirits through the ups and downs of MS. Joining outside support groups may help boost your self-esteem and fill the gaps, whether you have MS or are a caregiver for someone who does.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. More than 165,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
How has MS affected your relationships? What has helped you manage the changes? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.