How to Handle Talking About MS with Family

Talking to loved ones about any chronic illness can be difficult, yet it’s an important conversation to have with individuals who will continue to be a part of your life’s journey. Opening dialogue creates the space for both you and your family to gain clarity and to establish trust and boundaries. Since you are the only one who can communicate to them what it feels like to live with multiple sclerosis (MS) and what kind of support you might need – it’s important for you to open the floor for discussion with family members, close friends, and loved ones as you see fit.

It’s easy to become overwhelmed by informing others about your journey with MS, but keep in mind that you are in control of what you share, how much you share, and when you choose to do so. The ball is in your court, and while your loved ones want to know your game plan, what to expect, and how to support you, they certainly don’t want you to be stressed about having this conversation. Keeping that in mind, think about how you want to approach talking about multiple sclerosis with family.

Would it be easier to talk to your siblings and friends at one time, and then your spouse, children, or parents at another time? You may decide to share less information with extended family and friends; just enough for them to understand what multiple sclerosis is, how it could affect you and your relationship with them, and why you’ll be resting more or making certain lifestyle changes.

On the other hand, if there’s someone close to you who will take on more of an integrated role as you move forward, then this person would need to know more. Perhaps you’ll share a list of medications, contact information for your healthcare providers, and clear instructions about the kind of interventions you do or do not want to receive in the event of an emergency. Remember that you only have to do this once if that’s all you have the energy for.

Once you’ve decided who you’ll share your MS journey with, reach out and invite them to talk. Granted, what you’re experiencing is challenging and uncertain at times, but maintaining a positive and lighthearted tone can make talking to your family about MS much easier. Where you talk can play a major role in setting the tone, you’ll find a few suggestions below.

Where to Talk

1. By telephone or text. Talking about your MS journey via telephone or text offers some great benefits. It’s quite casual, you don’t have to travel or expend a massive amount of energy, and you can alleviate some of the “pressure” that comes with talking in person. Since you can’t see one another it eliminates the chance of misinterpreting semantics and facial expressions that can be naturally awkward while discussing challenging topics.
2. Family dinner or party. Maybe you’re interested in keeping things light and offering some reassurance to your family. In that case, a family dinner party can be a good choice, and an excellent way to say, “I’m going through this, but I’m okay.” This option could range from a casual conversation about key points to a family game of trivia or charades centered on uncovering facts about life with MS.
3. With like minds. There are several organizations that place focus on educating and supporting those living with multiple sclerosis, and their loved ones. Search the National Multiple Sclerosis Society’s database to connect with like minds. You’ll find local events, public forums, and potential friends or mentors who can offer advice or help guide the conversation.
4. With your doctor. Most doctors are happy to meet with you and your immediate family to go over your prognosis. Your doctor may have an idea of what’s important from experience with other patients, and (s)he can answer the harder questions, which takes the pressure off of you to know it all.
5. At home, in bed, and anywhere that feels right. Again, no pressure. You don’t have to plan an event to talk to your family about your diagnosis. You always have the option of letting the conversation occur organically in the comforts of home and daily life.

What to Talk About

Bear in mind that talking about multiple sclerosis with your family is for you and them. So it’s important to open the dialogue in a way that both perspectives are included. You’re sharing your journey, so that they can better understand your needs moving forward, but you’re also answering their questions, providing peace of mind, and preparing them for what’s in store. Below, you’ll find important topics to go over with loved ones.

1. Define the disease. An important first step is clearly defining what multiple sclerosis is, who it affects, and more specifically how it is affecting you. Let them know your symptoms, how your life has changed, and how you expect it to change moving forward (if at all). Let your family know that multiple sclerosis manifests and progresses differently in each individual, so that they are prepared for inconsistencies and flares.
2. Show them that it’s bigger than you. It may help to share a few celebrities with an MS diagnosis with your family, especially children who may not grasp the bigger picture right away. They may be surprised and encouraged to know that you’re not alone in this and that many people, even celebrities, are living their lives with MS every day.
3. Discuss your plan. It is a good idea to share your plan with your family members. Are you taking medication? Do you plan to use holistic treatment methods? Is there a specific diet you’ll adopt moving forward? Do you want or need someone to go with you to doctor appointments? Let your family know how they can help you execute your treatment plan, and be clear about what’s helpful and what’s not.
4. Discuss resources. The National Multiple Sclerosis Society offers a number of resources for your family members. These manuals are written for people to gain a better understanding of what it’s like to live with MS and how they can be a good support system, but they also discuss how to cope with difficult emotions and recharge as a family member or caregiver. Remember you are going through this, but they are going through it with you. Visit the National Multiple Sclerosis Society’s brochure page here and be sure to send your loved ones a copy of the Supportive Adjustment for Multiple Sclerosis manual, which provides an in-depth look at supporting a loved one with MS.
5. Remind them to be honest with you. You’re facing many challenges in living with multiple sclerosis, yet it’s still important to let your loved ones know that you are and want to be present for them. Encourage family members to be honest with you about how they’re feeling. Encourage them to ask questions and continue to communicate their needs in your relationship, and reassure them that you will do the same. If both you and your family members are committed to open communication, then it takes the guesswork out and reduces the likelihood of miscommunication, burnout, or frustration.
6. Encourage your loved ones to maintain their social life. You may be making some lifestyle changes and shifts to accommodate life with MS; talk about these changes with your loved ones, and encourage them to maintain their social life. You’ll have space to find a new pace with each one of your relationships if and when it’s needed. It will be nice for your loved ones to change pace with you, but they should know that they can keep their beat without hurting your feelings.

Multiple sclerosis affects each person differently. Thus there’s no definitive guide for talking about MS with family, but this is a wonderful place to get started. There may be other topics for discussion and consideration as you move forward, but keeping lines of communication open and establishing expectations can help both you and your loved ones feel supported and valued in the long run. Be sure to use resources from the National Multiple Sclerosis Society to build a support system for both your loved ones and yourself. You are not alone!