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Multiple Sclerosis

How to Build a Strong Support Team When Living with MS (S1E20)

November 8, 2023

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If asking for help feels unnatural to you, you are not alone. Most people living with Multiple Sclerosis are women, and many of us identify as Type-A overachievers. That is not exactly the profile of someone who feels comfortable admitting they need support. Add to that the fact that MS is an invisible disease, and it makes things even more complicated.

You might be able to power through for a while, but eventually the fatigue catches up. Suddenly, what was once manageable becomes overwhelming. That is when support becomes not just helpful but essential.

The Reality of an Invisible Disease

One of the most challenging aspects of MS is that others cannot see it. The fatigue, the brain fog, the pain—all of it happens behind the scenes. Because others cannot see what you are going through, they may assume you are fine. That makes it even harder to ask for help or explain why you need it.

But MS symptoms fluctuate. What you need today may not be what you need next month. The type of support you require can change depending on the season, your stress levels, or how your symptoms are showing up.

Let’s talk about how to make asking for help easier and more effective.

How to Ask for Help When You Have MS

Be Direct
Instead of hinting or waiting for someone to notice, be clear. Most people want to help but simply do not know how. If you have never asked for help before, they may not realize you need it. Being direct avoids confusion and builds trust.

Be Specific
Help can look different depending on the situation. Do you need help with errands? Emotional support? Navigating insurance? Be specific about what you need, and do not feel the need to explain or justify it.

Even how you describe your fatigue matters. Saying you are tired might not communicate the severity of MS fatigue. Letting someone know that your “MS fatigue is kicking in” can help them better understand your experience and respond more appropriately.

Be Understanding
Your support people are not mind readers. They cannot feel what you are feeling. It may be hard for them to watch you struggle without knowing how to help. Be open and honest with them. Tell them when you are struggling and also celebrate the good days with them. Sharing both builds connection and clarity.

Practical Ways Others Can Support You

Support looks different for everyone, but here are some ideas to help you identify areas where you can ask for help:

  • Running errands: Ask someone to drive you or help carry items to conserve energy.
  • Laundry: Enlist help flipping laundry, folding clothes, or teaching kids to do their own.
  • Supplements: Ask a partner to fill your supplement container. It is a small task but makes a big impact when energy is low.
  • Childcare or transportation: Ask for help getting kids to school or activities.
  • Doctor appointments: Request someone accompany you or help organize questions ahead of time.

The key is to identify what drains your energy and where support could create the most relief.

How to Build Stronger Relationships with Your Support Partners

Asking for help can feel vulnerable, but it also creates opportunities to deepen trust and connection. Here are some tips to strengthen those relationships:

  • Open Communication: Regularly share how you are doing and ask how they are feeling too.
  • Gratitude: Express appreciation. A simple thank you means more than you know.
  • Empathy: Understand that they are learning how to support you, just as you are learning how to live with MS.
  • Boundaries: Be clear about what feels helpful and what does not.
  • Quality Time: Make space for joy and shared activities outside of MS.
  • Education: Share information about MS so they can better understand your experience.
  • Patience: Give each other grace as you navigate this together.

Strong support is not just about having someone help you with tasks. It is about building relationships that nourish you emotionally, physically, and mentally.

Want More Encouragement Like This?
Tune into this week’s special episode of My MS Podcast: 🎧 Developing Your Support Team with MS.
Listen now to My MS Podcast

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I'm Alene, your MS Sister.

When I was diagnosed with MS in 2016, I was scared and felt alone. But as a Nutrition Coach, I knew there was more to healing than what I was being told. I took action and within six months the lesions I had on my brain shrunk and went inactive. Now, seven years later there has been no new lesions and no new activity. As a nutritionist specializing in multiple sclerosis, I help women take back control of their future.

That’s my story, but I’m not alone. It's your turn to start Thriving with MS. I’m here to show you the way. 

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