Don’t disconnect: How to stay socially active during an MS flare-up
Fact-checked by Multiple sclerosis (MS) is a chronic condition that can cause a wide range of symptoms. Because the symptoms are so broad, and sometimes unpredictable, some people living with MS may find it affects their social life. A 2024 cross-sectional study of 200 people with MS found that more than half reported high social isolation.
But staying social with MS is possible. And it doesn’t have to mean forcing yourself into activities that don’t feel good to you, or pushing through fatigue during an MS relapse.
Keep reading to get tips on explaining MS to friends and maintaining your social life even during an MS flare-up.
How to explain a flare-up to friends who don’t have MS
Explaining a flare-up to friends who don’t have MS can be challenging. Perhaps they don’t understand why you feel OK some days and lousy on others. Or they may not understand what an MS flare-up feels like, and how challenging it can be to stay social with MS. This may be especially true when you’re experiencing symptoms they can’t see, like brain fog or neuropathic pain.
One way of explaining MS to friends is by drawing analogies to something they’ve experienced. For example, you could tell them that neuropathic pain feels like when your foot falls asleep — but that the prickling sensation doesn’t go away, and that’s why you aren’t able to join them for a hike this week.
It may also be helpful to offer alternative activities to do together. For example, you could say:
- “I don’t feel up to hiking today, but I’d love to sit and chat.”
- “Brain fog is making it hard for me to follow a conversation, but I’d love to take a short walk with you.”
- “I’m having a flare-up right now, but can we touch base in a couple days? I’d love to hang out when I’m feeling better.”
The ‘Cancel Without Guilt’ policy: Being honest with your inner circle
If you’ve ever had a friend cancel plans with you, then you know it can be disappointing. But being on the other side of the text chain doesn’t feel great, either. It might even be tempting to force yourself to go through with plans just to avoid feeling guilty.
One way to combat this is by letting your friends know upfront that plans you agreed to when you were feeling good may be out of the question during a flare-up.
You can also consider implementing a “Cancel Without Guilt” policy among your friend group. This means that if you need to, you can cancel, and your friends can trust that it’s for a good reason. You can also let them know that the same goes for them: if they need to cancel or reschedule, they can simply let you know without needing to overexplain or apologize.
You could say something like:
- “I’m sorry I won’t be able to make it to dinner tonight. Can we touch base tomorrow? I’d love to reschedule when I’m feeling better.”
- “I was looking forward to coffee this morning, but I’m feeling really fatigued. Can we try this weekend instead?”
- “I’m having a flare-up this week, and it’s making it hard to focus. Can we reschedule our catch-up for another day?”
Prioritizing quality over quantity in your social calendar
It can be tempting to think that the more time you spend with friends, the more your social battery will be charged. However, this isn’t always the case. Some friendships and activities may fill you up, while others may drain you, and some may fall somewhere in between.
For example, you may have a best friend that you feel you can truly be yourself around. Maybe this person understands your MS symptoms and doesn’t judge or request more of you when you need to cancel or modify plans.
Another friend may make you feel obligated to push through fatigue during an MS relapse, or you may worry that if you don’t match their energy, your relationship will fizzle.
Staying social with MS will be easiest if you’re able to develop and sustain relationships that work for you. If there are certain friends or activities that feel best to you, it’s OK to focus your energy there. You may find that it’s much more fulfilling, and sustainable, to meet a close friend for coffee once a month than it is to attend social events every week, or go to a big party where you only know the host.
Managing sensory overload
Social environments can be exhausting for anyone, but this is especially true for people with MS. The disease damages the central nervous system via a process called demyelination, in which the myelin sheath — a protective sheath covering nerve fibers — is progressively lost. This means that the brain has to work harder than usual to perform tasks. Additionally, inflammation, muscle weakness, and disrupted sleep can exacerbate physical fatigue and lessen your tolerance for stimulating environments.
If you’re finding it hard to stay social during a flare-up, know that this isn’t a reflection on you, your willpower, or your commitment to your social relationships. Rather, your physical symptoms may be creating a barrier between what you want to do and what you feel capable of in the moment.
When making plans with friends, you may want to choose social activities that lend themselves to quieter, less stimulating environments. For example, watching a movie at home with a friend may work better for you than going out to a show.
If you’re invited to do an activity that may lend itself to sensory overload, there are ways to cope. For example, if a friend invites you to dinner, ask if you can choose the restaurant. Online reviews and photos will often tell you if the place you’re considering is noisy and bright or quiet with dimmer lighting.
Decompressing from the ‘post-social crash’
Sometimes, the aftermath of a social event can be just as challenging, or even more challenging, than the event itself. You may feel drained, have trouble winding down, or experience a spike in symptoms.
One way to set yourself up for success is to plan ahead. For example, if you know you’re going out, you can:
- Preemptively set up your space to be your sanctuary when you get home.
- Set out some comfortable clothes to change into.
- Sit in a darkened room for a while, and let yourself wind down.
It may also be helpful to avoid planning back-to-back outings and events. Give yourself at least a day in between to rest and recuperate — your body will thank you.
Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
