So, you’ve just been diagnosed with MS. Inevitably what you’re going to hear is “stay strong” or “you’ve got this” and I can’t forget the people’s favourite “everything happens for a reason.” From my own experience, this was the last thing I wanted to hear and sometimes still is. I know this sounds rather cynical, but people fail to understand how to comfort. All these phrases may be true, but they’re still dampened with unspoken expectations.
Subconsciously, you’re already telling yourself, I have to cure the uncurable - not just for me but for others too. It adds this uncomfortable weight so when you are in trouble and need that assistance you don’t feel like there’s enough room to ask. Don’t get me wrong, of course no one ever has bad intentions but it’s just about being more cautious of the effect words can have. When all you hear is “you’re so strong,” you start to believe that you’re not allowed to be weak. People will talk about strength as encouragement, not to give up but sometimes giving up is exactly what you need to do – allow me to explain.
MS is a silent thief; it robs you from the person you once were and the person you wanted to become. So, a lot of the time you find yourself having to adjust and in doing so you give up parts of yourself or things you used to do because your life now has a new reality. It sounds sad and hopeless but it’s quite liberating. Sometimes it’s ok to surrender to your disease, it’s ok for it to have control for a while whilst you recharge and regroup on what to do next – adapt along the way. But it makes sense doesn’t it, that people would associate the word “strength” with comfort. I used to think the same way before my diagnosis. This illusion that nothing has a glass ceiling and if you want it, you can have it e.t.c. But that’s not true, sometimes the answer really is “no, actually I can’t do that and that’s ok.” This form of acceptance doesn’t come easily but it frees you from this idea that you must be strong and put together all the time. It allows you to give up parts of yourself that are no longer valid and in return you learn new things, new ways to get by and get things done and that’s great too.
Anyone who has MS will know that you can never out smart it and try to bite the bullet. Even on a good day if you over work yourself, it will come back to haunt you. You learn very early on that some days are slower. This isn’t necessarily an issue but somehow amid the chaos of the world, being still feels like a sin. It almost feels like you’re a failure because you’re not constantly on the move when really, you’re just listening to your body. And that’s where the strength comes in. Identifying how and when your MS affects you and what troubles that will bring. Pivoting, flowing, allowing yourself to work hand in hand with your MS. To have the courage to say “Hey, I know I used to be able to do those things, but my body’s changed.” This is the real strength that goes unrecognised.
Real strength is also being able to tell people when and how you need to be assisted; to explain that “you’re strong” isn’t what you’re looking for. Instead “this must be hard for you” or “how can I help?” is much more effective. Sometimes even just sitting in the stillness with them, being there, present through the good and the bad, consistently showing up is what’s needed the most. By doing this you become the strength they can rely on when being strong isn’t an option. You see it’s not about finding the strength to go on, it’s all about meeting your MS in the middle. So, in most cases it’s about finding the strength to be exactly where you are.
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