MS Awareness Week 2025

Every time this week comes around I am really surprised that a whole year has passed again, and more importantly, I'm reminded of how lucky I am that my experience of #multiplesclerosis has been full of support, understanding and excellent care.

This year, the #msscociety #msawarenessweek theme is #msconversations; opening up discussions on aspects of the condition that can be difficult to talk about, ask about or explain. In my experience, they are not always obvious topics of discussion, because often the limitations are invisible, or deliberately hidden due to embarassment. They are however likely to be a daily part of living, and like lots of subtle difficulties, they can be really hard to put into words, especially if it's your ability to find the words that is something that is affected.

So how do we start a conversation when everyone's experience of #ms is different?

For me personally, I'd want people to know/talk about the following:

• It goes without saying that I still live with symptoms on a daily basis (not many people see the bits where I collapse into a heap!), but in amongst all the "life-I-can-manage-today"planning, I also enjoy a full and active schedule, and I'm genuinely so happy with what I get to do and how I get to live. I often wonder if I would have had the courage to live the way I do, without my diagnosis giving me a much needed kick up the butt. Funny how the worst things can create the best decisions.

  
  

• I'd also want people to know that I'm pretty strong and capable and can do loads, as long as I am fully in charge of how much I take on in one go (self employment has been my saviour), but I still may need to change plans, cancel arrangements and #sayno sometimes. This last one has become much easier since I worked out that saying no in the first instance, is easier than saying no later #lifehack.

  
  

• An unexpected part of my #ms experience has been people saying "oh yes, that happens to me" when I describe something I struggle with. It's really hard to explain the full extent of some of my symptoms and to be honest, most of the time I don't really want to, or I feel too fatigued to work out how to put it into plain English, so I get why it happens. Also I know that sometimes people want to relate themselves to my experience so that I feel more normal and like everyone else. It's much more often than not, coming from a really kind place. So although it's a bit of an eye-roller, it mostly feels caring.

So why are there awareness campaigns?

With better understanding and a more open conversation around what is and what isn't helpful for this variable and unpredictable condition, during times of fatigue and illness, it will be easier to ask for what's needed.

And hopefully it will reduce some awkwardness for people who would like to ask questions but aren't sure whether they should.

I'd love to hear from you if any or all of this sounds like you or someone around you. And if you want to start with"oh yeah, that happens to me" then go for it. I don't think for one moment that it's only #multiplesclerosis that creates life-limitations, and this week is all about awareness and conversations, so lets get it all out there so everyone feels comfy in their own way of life.

Send me a like or a comment if this has caught your attention - I'm always here for healthy ideas, inspiration or maybe you just need to hear someone say "yes I understand how that feels and it can be rubbish". Love, Lynne x