Building Your Support System for Life With MS
Last updated: August 2023
When I first heard the words, “You have MS,” it was just six weeks after my mom passed from cancer. How was I about to enter the greatest challenge in my life without “my person?” I knew I couldn’t get through this on my own, but who could I turn to now and who will be there for me in all the years ahead living with this chronic, incurable illness?
We are not meant to carry the heavy weight of MS alone. We need support.
The support that each of us needs will look different and it will likely change throughout different seasons of life and healing. But we can’t get through this alone.
Accepting that we need support
Does the thought of that already trigger feelings of guilt for you? It does for me. I know how to be a caregiver. I don’t, however, like being on the receiving end, and having to depend upon someone else for daily activities.
Here’s the thing, getting MS is not our fault. We certainly didn’t choose this diagnosis, yet here it is. Personally, I have wasted a lot of energy resenting the diagnosis and the circumstances that it’s created in my life, but that hasn’t changed my diagnosis in any way.
It’s natural to experience a range of emotions, however, when we come to an acceptance that creating a support system is not a weakness, but a strength, it shifts everything. It did for me at least, and I hope it can for you too.
Building a support system
The reality is that no one person in our life can fill all our needs – MS or not. My husband cannot fill the shoes of my closest childhood girlfriend, and vice versa. No one can fill the shoes of my church friends who have walked me through some of my most challenging seasons in life. And then there are the people that have come into my life for a season and then life took us in different directions - we helped each other during the time we were together.
My point in sharing all of this, is to remind us that we can’t expect one person to fill all our needs in life, and certainly not a life with MS. If you’re currently building your support structure, or maybe you’ve had one for many years, but want to rethink it, I invite you to consider the following questions.
Who are the good listeners in your life?
Think about those friends or family members who truly listen without judgment when you share your thoughts, fears, and frustrations. They may not have firsthand experience with MS, but their ability to empathize and provide a safe space for you to express yourself is invaluable.
Who are the practical helpers in your life?
Identify those individuals who are reliable and willing to lend a helping hand in practical ways. They might be the ones who run errands for you, pick up groceries, or help around the house when your energy is limited. These are the people you can count on to lighten your load and provide much-needed support in managing daily responsibilities.
Who are the cheerleaders in your life?
Consider the friends or family members who always uplift and encourage you. They are the ones who believe in your strength and resilience, even on your toughest days. Surrounding yourself with people who help to lift you up, is key for the long game with MS. And if you feel like you need a boost in this area, remember, that listening to an encouraging podcast can help to fill this gap too.
Support needs are ongoing
Remember, building a support system is an ongoing process. As you move through different seasons of life and face new challenges, your needs and the people who can fulfill them may change.
Stay open to new connections and be willing to reach out for support when you need it. Most of all, I hope you included this community here as one of your support systems! We’re glad that you’re here, going through this wild journey with MS together.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: