You likely have several variations of support partners in your life. These are the people who contribute to your well-being by providing a wide range of assistance — anything from mental and emotional support, to physical help around the house, to accompanying you to medical visits, and so much more. This article is written for them, so please share it with your family and friends to open the discussion about ways that they, too, can be empowered.
As a support partner, you’re in a unique position to help your family member or friend living with MS. You can provide emotional support to make their journey a little easier, or physical support in a variety of ways to help improve their quality of life, and you also see them from a different angle than they see themselves, which provides helpful perspective. But how can YOU be empowered to be a partner in care that is best for the both of you? We’ve compiled a list of several strategies that you might want to consider.
Ask and Listen: Don’t be afraid to ask someone how they would best like to be supported. However, it can be difficult for people to answer such an open-ended question, so you may want to offer specific suggestions and ask if that would be helpful or is there another way they would prefer. For instance, if they are feeling overwhelmed or particularly fatigued, you might say “I’m going to the grocery store tomorrow, would you like me to pick up anything for you? Or is there another way that I can help right now?” Most people would prefer to be asked about what they want, rather than have someone take over to do something for them.
At other times, listening may be the best thing you can offer. Sometimes a person just needs to talk about their situation and know that they are being heard. Other times talking through an issue can bring a different perspective which might lead them to see a new solution. Don’t offer a solution if they don’t ask for one, just listen to their experience and see what they come up with on their own.
Asking and listening are actually pretty complicated strategies and different approaches are warranted for different situations and people. It can be very helpful to think through a conversation in your own head before having it with someone else to determine the best option.
Learn Together: One of the most powerful things that support partners can do to help someone living with MS is to have a shared understanding of the disease and a common language for talking about it. This can help improve communication about symptoms or other challenges. Working to more fully understand the experience of MS can help you be a more empathetic support partner. Sometimes it is easier to learn from a third-party professional and then come together to discuss. This can open the door to a difficult topic and make it easier to start that conversation. When you both watch or attend a presentation together, you are also going to have a more common language to describe that topic, which can limit confusion in the future.
Good For You, Too: So many of the healthy habits that we encourage people living with MS to adopt are actually good for everyone. You can support your family member or friend by enthusiastically joining in on the changes they want to make. If they want to incorporate healthier foods into their diet, offer to help cook at home instead of going out, or meet for an activity that isn’t happy hour to socialize. What about a museum, art class, or yoga session? Get the family involved in meal planning or a weekend activity outside the house. It can be incredibly difficult to make healthy changes to a routine when the people you surround yourself with aren’t excited about them.
Communication: It’s very common for relationships of all kinds to have a little trouble communicating at some point. Throw MS into the mix and it’s almost guaranteed that there will be a few difficult conversations. If you’ve had trouble talking about a subject in the past, consider setting up a codeword that either of you can use to pause a conversation before it gets out of hand. Or perhaps one of you wants to talk about a sensitive topic but you’re overwhelmed today, or they’re extra fatigued and you know before you start that the conversation will not be productive. Saying the word “pineapple” will take you out of the moment pretty quickly and add a little lightheartedness to the request to continue this at a later time. Agree to come back to the topic once you’re both in a better spot. If there’s never a good time to talk about something, it may be worth considering calling in a professional in the form of a therapist or social worker.
Another communication strategy is to set up a regular time when you will discuss MS related topics. This will take the pressure off finding the right time every time, and both of you can mentally be prepared to tackle the subject together. Keeping a regular schedule means that multiple issues won’t pile up and become even more complicated. Be sure to explain your reasons behind something to help your loved one understand. For instance, if you are worried they aren’t adhering to their treatment plan, instead of just nagging them about it, tell them that you’re concerned that if they skip their medication they may have more serious MS consequences. This can open the door for a conversation about why they aren’t taking their medicine or other concerns that they have which may lead to better understanding and cooperation on both sides.
Think Ahead: Have a conversation about a potentially troublesome situation before you’re in it. This can apply in so many situations! If you’re going out to an event and you know that your loved one may have difficulty walking once the sun is out and it heats up, but you also know that they value their independence and get upset when you’ve tried to offer assistance in the past, talk about the situation before you leave the house and ask when they’d like you to step in and how they’d like you to assist. This gives you the confidence to offer help should the need arise, and it gives them confidence that you’ll respect their wishes.
Judgement-free Observations: As a support partner, you’re in a unique position to observe someone from the outside. If you notice a change in symptoms, such as gait, cognition, or energy levels, ask if you can share your observations with your loved one. If they’re open to it, tell them what you’ve noticed without attaching a value judgement to it. Perhaps they hadn’t noticed that their walking has slowed lately, or that when they’re stressed they have a harder time finding the right word. Understand, too, that these observations may be upsetting which is why you should deliver them judgement-free. It may be helpful to keep a written journal of these observations to assist with keeping them factual rather than vague and emotional. Some of these observations may be very valuable at a doctor’s appointment to help the doctor get a fuller picture of what their day-to-day experiences are. You can also be a second set of ears at an appointment to help take notes.
Beyond MS: Don’t make every interaction about MS. A person living with MS is a whole person who happens to have MS. And you are also a whole person who happens to care for a person living with MS. It is important for both of you to have lives outside of MS. Taking time away from MS, whether that is time spent on individual interests and other relationships or doing non-MS related activities together, will recharge you and help you to have the energy and mental fortitude to handle the day-to-day realities of supporting someone living with MS.
Self-Care: It’s easier said than done, but it is so important for support partners to make sure that their own needs are attended to. When you’re stressed, struggling, or feeling unwell, you’re not going to be able to bring your best self to the table. If this is an area of difficulty for you, consider this: what is the smallest thing that you can do in a day to take care of yourself? Perhaps it’s making sure that you eat a good breakfast to start the day well or taking five minutes in the middle of the day to stretch or give your brain a break so that you’re a little more refreshed for the rest of the day. Celebrate it any time that you’re able to do something good for yourself. When you acknowledge what you’re already doing, you’ll start to look for other small ways that you can take care of yourself.
Being a support partner is both rewarding and challenging. It can be difficult to know how to provide the support that your loved one needs, and it can be difficult to make sure that your own needs are taken care of simultaneously. Like all relationships, there will be mistakes. We don’t get it right all of the time and that’s okay. Take a pause, consider if any of these strategies can help in the future, give yourself and your loved one some grace, and choose to try again. Focus on all of the positive ways that this relationship enriches your life and show up from a place of love and empowerment.
