In her book, Set Boundaries, Find Peace, licensed therapist Nedra Glover Tawwab writes, “The root of self-care is setting boundaries: it’s saying no to something in order to say yes to your own emotional, physical, and mental well-being.”
MS inserts itself into a life and affects every individual and every relationship differently. One important strategy to manage your MS, your health and wellbeing, and your relationships is to set healthy boundaries. Boundaries are a tool to help you take care of yourself and prioritize your needs.
Boundaries can be particularly helpful when living with MS. “Unfortunately, having a chronic condition means you may not be able to do the same things as you used to or as people around you are able to do,” explains licensed clinical social worker and MS Educator Elissa Berlinger, “So, it is important to learn and recognize your own abilities. Part of this is recognizing and setting healthy boundaries for yourself and others to better help manage living with MS.”
Boundaries allow you to communicate your needs and expectations to your friends, family, or coworkers. For example, if you are experiencing MS fatigue, saying no to an invitation to a party at a friend’s house, or to take on a new obligation at work, is an important strategy. Setting that boundary allows you to conserve your energy and to help protect your physical and mental health. The act of simply saying, “No,” is powerful.
Berlinger recommends not being shy of using one’s MS as a way to say ‘no’ and as a way of asking for help. During times when you’re feeling exhausted, depleted, or your MS symptoms are particularly challenging or limiting, it’s important to let people know that you could use some help. It’s helpful to be specific when you are asking for help. For example, “Could you please stop by the store to pick up a few groceries for me?” “Would you be able to drive me to my appointment tomorrow? Could you please drive my kids to the birthday party?” It’s easier for people to help if they know exactly what you need and you’ve communicated a specific request.
Saying “No” can be difficult and setting boundaries, especially with loved ones, is often very challenging. It’s important to remember that setting healthy boundaries is not selfish or mean. It’s a fundamental strategy for prioritizing your well-being. We can set healthy boundaries using clear communication in a compassionate way. Clearly communicating your needs is the first step. “Part of setting healthy boundaries may look like a trial and error. And it’s important to recognize that boundaries for oneself and others can change over time,” says Berlinger, “In particular with MS, fatigue is a frequent symptom and having healthy boundaries is one way of supporting one in managing fatigue. Setting healthy boundaries helps to ensure you have enough reserve to do the things you need or want to do.”
Here are some examples of effectively and politely communicating a boundary:
- It’s important to use direct and clear language. For instance, saying “I cannot attend the holiday party.” is more direct and clear than “I don’t think I’m going to be able to attend the holiday party.”
- It’s helpful to use “I” statements. For example “I need to rest and go to sleep by 10:00 pm. I’m not able to talk on the phone after 9:00 pm.”
- Sometimes the simpler the statement, the better. For example, “No, I’m not able to run that errand today.” instead of “If I run that errand, I’ll overexert myself, my MS fatigue will get worse, and I’ll be on the couch for hours.” Over-explaining your reason can make your message less clear or open up a conversation that you may not want or need to have.
Part of healthy boundaries is also being ok with having to miss out on certain activities and tolerating a degree of uncertainty with people not always liking you setting a boundary, in particular if they aren’t used to you saying no or asking for help.
Setting those initial boundaries with family or friends can be challenging, but it can be even more difficult to maintain them. Preparing for people to test or pushback on your boundaries is important. Thinking through your responses to individuals who test your boundaries can be helpful. For example, if you’re pressured to reconsider going to that holiday party, you could say, “Thanks for checking, but I definitely won’t be attending.” And if a person calls or texts you after 9:00 pm after you’ve communicated your boundary, you could simply not answer or respond. Or you could ask them if it’s an emergency and if it’s not, politely let them know you’ll call in the morning.
Asking for help is another important way of setting a healthy boundary by clearly communicating your needs to the other person. “It’s very important to recognize when you need help and to be able to ask for help-both from a physical and emotional needs perspective,” says Berlinger, “It can be useful to have a plan for the day and communicate that plan to others. And an important part of this is also communicating that MS can be unpredictable through the day and that this plan may need to change and have some flexibility.”
There are many different ways to communicate your needs to your friends and family. Nancy Boyd has lived with MS for more than 20 years and developed a strategy that has helped her to clearly communicate with her husband about how she was feeling and what she needed. Nancy created an “MS-Me Dial” which she posted on the fridge. The dial was an easy and clear way to let her husband know how she was doing that day. “On the red portion of the dial, I included a spot to ask for ‘help!’ so that he would know I was struggling and had a task that he could help me with,” explained Nancy. “From my husband’s perspective, I think that it has actually given him the ability to be more supportive because it was stressful for him to try to figure out what was going on and to know that he was probably going to guess wrong. So he loved this and asked me right away to please keep it up to date.”
Nancy’s technique is a great example of the power of maintaining healthy boundaries by communicating how you are you doing and your needs. It can be tempting to assume that other people recognize your needs and expectations of them.
However, especially because the often invisible symptoms of MS and your particular experience may be difficult for the people in your lives to understand, it is important to clearly and consistently communicate your needs to them.
Effectively communicating your needs is crucial and requires practice. One strategy to help with this communication is to share resources about common invisible MS symptoms such as fatigue, mood changes, and cognitive challenges with the people you’re close to in your life. Having a common understanding and shared language about the reality and impacts of those symptoms can be helpful as you navigate various daily challenges.
Throughout the pandemic, healthy boundaries take on even more complexity and importance. For example, even though mask mandates have been lifted, you may not be comfortable taking your mask off yet because you are immunocompromised or have young children. And that’s okay. It’s important to make sure you communicate clearly with friends, family, and co-workers so that you can have a shared understanding of your concerns and comfort level so that it’s not a guessing game for everyone. Others will have different comfort levels and it’s important to be respectful of one another’s boundaries.
It’s important to remember that these are your own individual decisions and you’re not responsible for other people’s reactions to your decisions. When implementing boundaries, it’s key to recognize that you can’t control other people’s actions or decisions; the only thing you can truly control is yourself.
Self-care is also saying YES! Consider what activities or practices do help to reenergize you, give you peace, and strengthen you. What things do you want to say yes to more often for the sake of your health and wellbeing? Maybe for you that means making time for an exercise class, a walk, listening to music, visiting with a friend, or spending time by yourself to recharge. Perhaps you decide you want to prioritize improving your sleep as a self-care practice and you’ve decided you need to make some changes in your evening routine. You might decide to schedule time an hour before bed to read a book or take a bath instead of spending that hour watching television show. Or maybe you want to prioritize re-connecting with a friend because you know that having strong relationships and support is an important part of your self-care.
You may decide to set a boundary with social media and the news to protect your emotional wellbeing. If you realize that you are spending too much time on your phone looking at social media or are feeling anxious and consumed with the ever-present barrage of news stories, you might decide you need to set a boundary for yourself. Setting your boundary could mean you have the space and time to embrace things that help ground you or empower you. For each person that will be different – maybe it’s having more time for preparing healthy snacks for your week, slowing down and taking some deep breaths, or reading a new novel by a favorite author.
Boundaries allow you to have more control over how you are spending your time in ways that benefit and prioritize your health and wellbeing. Reflecting on ways that you can say yes to things that serve you well is key. A first step can be creating a self-care menu just for you. Please see “Creating a Self-Care Menu” on the left for some ideas to get started.
