Multiple Sclerosis

Developing Your Support Team with MS

November 8, 2023

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Developing Your Support Team with MS

When it comes to MS, women outnumber men by nearly 4 to 1. And this gender gap has only widened in the last 50 years. Why am I sharing this when we’re talking about developing your support team for managing MS? 

Because generally speaking, women tend to be the caregivers, so it’s not only really uncomfortable for us to think about needing support let alone having to ask for or receive it.

Yet here we are living with this invisible chronic illness of which fatigue is one of the most common and challenging symptoms. 

I find the invisible aspect of the disease to be a bit of a double edge sword. I like the fact that not everyone has to know about my diagnosis unless I choose to tell them. However, the major downside to an invisible disease is the fact that nobody knows the true weight of the fatigue. 

It’s humbling. 

As the saying goes, if you know, you know! 

And the situation that we can easily find ourselves in is trying to act like everything is fine, like we are our same normal selves… until we can’t anymore.

We do our best to mask it, but then we hit a wall that we can no longer push through.

Well, we certainly try but we all know how that goes. That’s just a recipe for disaster. It only sets you back even further, making it feel near impossible to get out of. 

So we eventually come to the fact that we need support. 

What type of support we need varies not only from person to person but it may also vary from season to season with the same person. 

For example, if you’re affected by heat, you may need more support in the summer versus the colder winter months. 

Or in a different season of your life you may have a lot of other life stressors going on that trigger your symptoms so you may need a different type of support then. 

Today I want to talk about probably the hardest aspect for us… having the courage to ask for help. 

Be Direct

My best advice is to be direct. 

It’s easy to casually drop hints about needing help because you don’t want to have to ask for it, but the reality is, family and friends don’t always pick up on hints. 

They need and want you to be direct when you want help. 

This is especially important for those of us who never asked for help in the past. 

They’re not used to us having to ask for support, and depending upon how long that pattern has been established, the idea of you needing support isn’t something that crossed their mind. 

It’s not a reflection of their love for you. 

It’s not something that they proactively think of, but that doesn’t mean that they are willing or don’t want to help. 

So be direct in asking for help. 

Don’t drop hints, ask for help. 

And when you do ask, you don’t need to over explain yourself. 

They don’t need a backstory, they just need to hear that you need help. 

Be Specific

What do you need help with?

Do you need help completing a task?

Do you need emotional support – just someone to listen to you and help you to think through something on your mind?

Do you need help figuring out how to deal with insurance so you can get the medication that you need? 

Be specific with what you need. 

It’s also important to be specific when it comes to describing how you’re feeling. 

I find that clarifying when “MS fatigue is kicking in” versus just saying “I’m tired”

It helps family and friends understand that this is different from their understanding of being tired at the end of the day. 

I didn’t learn until recently that I would use the same words for two different experiences, so how could I expect my family to understand when it was MS and I needed support versus when I was just tired and wanted to relax on the couch? 

Be Understanding 

Look here’s the reality of the situation, it’s not easy to live with a chronic illness like MS. We carry a heavy weight every single day. And we often shield our family from ever seeing the true weight of it. 

But we can’t lose sight of the fact that it’s hard on them too. 

It may be really hard for them to see you struggle and not be able to “fix” it. They can’t take MS away from you no matter how much they want to. 

It’s also really hard for them to understand the concept of an invisible disease. They can’t feel what we’re feeling. 

Unless we’re open and honest in our communications with them, they don’t have a visible way of knowing when we’re struggling and when we’re not. 

So help them out. 

Communication skills are essential in any relationship, but they are critical when it comes to MS. 

Bring them into your world, by helping them to know when you’re struggling… and when you’re not. 

Celebrate those moments with them too! 

Okay, now let’s talk about some ways in which family and friends can support you. 

It’s also important to be specific in what support you need. 

What would be most helpful to you at that moment? 

Again it will be different for each of us, but here are some suggestions to hopefully spark ideas for you. 

  • Running errands – one of the things I find especially helpful is when my husband will drive when i’m running errands, then I don’t have to bring my daughter into each store, dealing with the carseat, the stroller or the shopping cart. He can also pull me right up to the front door and everything just goes so much fast and requires far less energy on my part. Now of course the down side to this is that I have to do it at a time that works with his schedule. And he’s pretty good and being flexible however, it’s not always on my time. That’s on me to manage my desire to want things done right away. I can’t put that on him.
  • Doing laundry – we all know how quickly laundry can pile up! We can ask for help with one aspect of it, like flipping the laundry from the washer to the dryer or folding the clean laundry or the whole process. It may also be time to have your kiddos start to learn how to do their own laundry.
  • Here’s kind of a silly but supper helpful thing to ask for – filling your supplement container. That takes time but it’s something that we could easily skip when we just don’t have the energy or the strength left in us. And that can lead to us falling out of our supplement routine that’s helping us to manage our health. This is a great ask when it comes to your support person. 

Okay, I could continue on and on with ideas – we haven’t even touched on asking for help taking kids to and from school and activities or taking you to a doctor’s appointment, but start to pay attention to what drains your energy most and what might be easy to delegate or ask for support in doing. 

Building Relationships with Your Support Partner

The last thing I want to touch on is building strong relationships with our support partners. 

Let’s face it, it feels vulnerable having to ask for support but it’s also an opportunity to strengthen bonds with those who care about you. Here’s how:

  • Open Communication: Keep the lines of communication open. Share your needs and encourage them to express their thoughts too.
  • Gratitude: Show appreciation for their support. A simple “thank you” can go a long way.
  • Empathy: Try to understand each other’s perspectives and challenges.
  • Boundaries: Set clear boundaries to ensure mutual respect.
  • Quality Time: Spend enjoyable moments together beyond the realm of MS.
  • Education: Educate them about MS to enhance their understanding.
  • Patience: Be patient with each other, allowing room for growth and learning.

Remember, strong relationships with your support partners not only aid in managing MS but also enrich your life in many ways. Building and nurturing these connections is a valuable part of your journey.

I Want to Hear from You!

What works best for you in asking for help and working with your support partner?

Please share in the comments below.

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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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