How To Tell Others About Your SPMS Diagnosis

When your multiple sclerosis transitions to secondary progressive MS (SPMS), you might wonder how to share the news with your loved ones — or if you even want to. Talking about this next phase of your life with MS can feel overwhelming and emotional.

Tips for sharing your SPMS diagnosis

Clinical health psychologist Grace Tworek, PsyD, shares strategies for telling others about your diagnosis.

Take your time

“There’s no right or wrong time to tell the people in your life about your diagnosis,” Dr. Tworek says. “You’re likely still coping with it yourself. So, give yourself some grace as you decide what timeline feels right for telling others.”

If you’re especially anxious about sharing your diagnosis, ask someone from your care team for guidance. Talking to a counselor, psychologist or social worker can help guide you and prepare you for what to expect — and how to respond.

Tailor your conversations to your relationships

Different people in your life will warrant different types of conversations. You’re not likely to share as much with your coworkers, for example, as with your partner, your parents or your best friend.

When deciding who to tell and when, ask yourself questions like:

• Who do I want or need to know right now? Who can wait?
• Who will I need support from as I adjust?
• What kind of support might I need? What will those people need to know?

“With the people in your life who act as caregivers, it’s important to share what this new diagnosis means for your daily life and how you expect things to change,” Dr. Tworek says.

“But others don’t need those details unless you want to share them — and it’s perfectly OK to share information about accommodations you may need without providing additional details.”

Plan it out

This step may not apply to you if you’re more of a go-with-the-flow person. And if you feel comfortable jumping right into conversations about your diagnosis, great! Do what feels best for you.

But if you’re feeling stumped or anxious, take some time thinking through what you’ll say and how you’ll say it. You can:

• Write it down. Creating an outline or even just jotting down a few notes and phrases can help you get comfortable with the language you want to use.
• Practice first. Do a test run alone in your bedroom or aloud with someone you trust, like a therapist, to get ready for your discussions with loved ones.
• Prepare for a variety of responses. Everyone reacts differently to big news, and there’s no telling how different people will respond. In your prep phase, consider different scenarios and how you might respond to each of them.

“You won’t be able to prepare yourself for every aspect of every conversation — and that’s OK,” Dr. Tworek reassures. “But taking time to think through what you’ll say and how others might react can help you enter these discussions feeling more prepared.”

If you have a go-to coping skill, like deep breathing or a meditation exercise, she recommends planning to rely on it as needed.

Explain your diagnosis

When you’re telling people that you have SPMS, it’s important to help them understand what SPMS is. You might explain, for example, that it’s the next phase of the disease — that instead of having flare-ups, your symptoms will steadily get worse without full periods of recovery.

That doesn’t mean you have to share every aspect of your personal health. But it may mean using explanations like:

• “My MS is changing, and I won’t have flare-ups like I used to. Instead, my symptoms will get worse over time.”
• “This stage of my MS doesn’t mean I’m suddenly very sick. But it does mark a new phase, which means my condition will continue to shift.”
• “As my symptoms progress, I might need to pace myself differently or adjust the way I do things.”

You’ll also likely want to share some information about how SPMS has affected you so far — but how much you share is up to you.

Tell them how they can support you

When your loved ones ask what they can do to help, clear and specific communication can take away the guesswork.

“You don’t have to have all the answers right away,” Dr. Tworek says. “But you can start by telling them what they can do that would make things easier for you.”

That may mean saying, for example:

• “These days, my energy levels are really low by mid-afternoon. Could we switch our monthly dinner dates to a monthly brunch instead?”
• “I’ve been using my cane more often. When we get together, I’d appreciate it if we could pick spots with nearby parking and minimal stairs.”
• “Brain fog makes me forgetful. It would be helpful if you could text me important information, like event details, so I don’t lose track of it.”
• “Sometimes, I’m so fatigued that I end up canceling plans at the last minute. If I ever do that to you, please know that it’s not personal. It all depends on how I’m feeling that day.”

You can also keep it simple and open-ended: “Some days I feel better than others. But I appreciate offers to help, even if I don’t always accept them.”

Make space for their questions

When you share the news of your SPMS diagnosis, some people may respond with questions — and others may feel too nervous to ask them for fear of seeming intrusive. If you’re open to answering their questions, it can be helpful to invite them to ask.

“This gives them the opening to have that dialogue with you and to better understand your condition,” Dr. Tworek notes. “It also gives you the opportunity to correct any myths or misinformation about MS that they might be living with.”

If someone asks a question you don’t have the answer to, try a simple response like, “It’s still too early for me to know,” or “I don’t have the answer to that yet.” On the other hand, if they ask for more information than you’re comfortable sharing, normalize setting boundaries.

“It’s always OK to say, ‘I’m not in a place to answer that right now,’ or simply, ‘I’m not comfortable talking about that,’” she adds.

Offer resources

It’s not necessarily your job to educate other people about multiple sclerosis. But chances are, you’ve done a fair amount of research into your condition and know which resources you’ve found more helpful and reliable.

“Sharing helpful resources can give your friends and family a better understanding of what you’re going through and what you may experience as your condition progresses,” Dr. Tworek says. “This gives them a reliable starting point.”

Encourage them to seek support, too

You can let your loved ones know that there are resources specifically targeted to them, too. Support groups, for example, are a space where caregivers can process their feelings, learn new coping skills and connect with people with similar experiences.

“I always remind people in caregiving roles that they cannot pour from an empty cup,” Dr. Tworek shares. “Caregivers need to take care of themselves and their needs, too — and sometimes, they need help figuring out how to do that.”

Keep the conversation going

SPMS is a progressive condition, which means your abilities and needs will change over time. So, plan to continue communicating with your loved ones, especially those in caregiving roles.

“If you used to be able to do something, but your abilities have changed, let them know so they can adapt their understanding and expectations,” Dr. Tworek advises. “Remind them that adapting an activity or going about it differently won’t take away from the joy and fulfillment that you can still experience together.”

Why tell loved ones about your diagnosis?

Telling people about your diagnosis isn’t just about sharing facts — it’s about creating connection. And that connection can make a big difference in how you cope.

It’s an opportunity to strengthen your network of support. By explaining what’s changing — and what isn’t — you help the people in your life understand how to best support you in whatever comes next.

This is especially important because research shows that when you’re living with MS, feeling like you have a support system in place can lower your risk of developing mood disorders, like depression and anxiety.

Studies also show that communicating with family members about disease progression helps relieve some of the stress MS brings — both your stress and theirs. When everyone’s on the same page, families can function better and help one another cope.

“After an MS diagnosis, it’s not uncommon to want to withdraw,” Dr. Tworek recognizes. “But when you share what you’re dealing with, the people in your life have the opportunity to step up and support you. They can’t do that if they don’t know what’s going on.”