The MS Crap Gap: What No One Tells You About Multiple Sclerosis and Infusions

Hearts shining brightly, reminding us to bring love and kindness along our journey.

They don’t talk about the emotional chaos that hits right before an MS infusion. Doctors call it coincidence. Neurologists say it’s not a thing. But anyone living with MS? We know the MS Crap Gap is real — and brutal.

It’s that stretch — a week or two before your infusion — when your body starts to unravel or unwind. You’re tired, cranky, foggy, emotional. And the worst part? Everyone around you, even the professionals, might tell you it’s in your head. That it’s not part of the process. But anyone who’s lived this cycle knows: the before is just as heavy as the after.

In those days, your brain goes into a bit of panic mode. “Is this getting worse? Is it failing? Am I back where I started?” The grief, the fear, the uncertainty — it hits harder than any symptom tracker can capture. And on top of it all, you’re often having to explain or justify what’s happening to people who will never fully get it. A big issue for people living with MS.

I've lived this cycle. I’ve had to learn how to manage not just my symptoms — but my expectations of others. And that’s part of the work too. I think overtime it becomes a part of the journey - part of the known.

My Experience with the MS Crap Gap

For me, the MS Crap Gap isn’t just physical — it’s emotional, mental, and spiritual. In those two weeks before my infusion, I start to feel like I’m winding down. My energy drops. My focus scatters. And emotionally? I can feel like I’m walking through fog — heavy, slow, and a little disconnected from myself.

So now, I plan for it.

I’m extra kind to myself in that window. I stop trying to “push through” and instead limit what I take on — emotionally, socially, professionally. I carve out space. I say no more often. I book the day after my infusion off so my body has time to catch up and recalibrate.

And I take extra care of my mental health:

• More grounding practices

• Less noise

• More softness, less hustle

• More stillness, less stimulation

• A lot more compassion for myself

MS has taught me that rest isn’t a luxury — it’s a requirement. Honouring the 'crap gap' has become part of my rhythm now. I don’t fight it. I work with it.

From One MS Warrior to Another

The blessing I have is being able to sit with other women who are going through, not only the MS Crap Gap, but the daily struggles that come with MS. There is nothing quite as healing as being heard by someone who’s also living it.

I know that for many women with MS, there’s a deep, quiet ache, the sense that no one really gets it. The fatigue that’s invisible. The decisions you have to make every day about energy, movement, emotions, and how to hold it all together.

That’s something I’m honoured to offer you: a space where you don’t have to explain. Where the intricacies of life with MS are understood without needing a medical file.

Let’s do this together, because I truly get it. And you don’t have to carry this alone.

If you're in the thick of the MS Crap Gap, please know — you're not imagining it. You’re not overreacting. You’re living something real, and hard, and invisible. You don’t have to do it alone.

I offer counselling for women living with MS — focused not just on survival, but on making peace with the unpredictable and reclaiming your sense of self, one real conversation at a time.