Let Me Fail: Being Independent with MS
Last updated: September 2023
I know at times we can feel helpless, like we can’t get things done on our own. It’s either too much physically and/or mentally. Those around us might see us struggling while trying to accomplish what we’re attempting to do and want to lend a hand because it’s the courteous thing to do. It's almost instinctual.
We appreciate the help, but...
Thank you to those loved ones who lend a hand when they see that we’re struggling. We appreciate you and all that you do, more than you know. So please don't take what I’m about to say the wrong way if you are one of those people.
We will struggle and fail sometimes
Being diagnosed with multiple sclerosis is a life-altering event in our lives. We have to ‘find our new normal’ and figure out how to live our lives with this new roommate that is MS. In doing so, we will struggle, we will try, and we will fail. This also doesn’t only happen right after diagnosis. If we have a flare, it happens ALL over again.
Let us try
What can be frustrating, which I feel horrible for even getting frustrated about, is that sometimes you don't let us TRY. I know it's a complete instinct to help those that you love and care when they struggle. However, we need to try to do things on our own. If and when we do need help, we know that you are there for us and we can ask you.
Trying to regain control
One of my biggest struggles living with multiple sclerosis is that I live day in and day out fighting my own body. I feel that the reason we need to try to do things on our own a lot of the time is for ourselves. It’s so that we don’t feel completely helpless in a situation that we have no control over. So, in a sense, it’s almost a control aspect. We have no control over what this disease has done to us or what it can do to us in the future.
"Take that, MS!"
In that aspect, us accomplishing something that we struggle with because of MS is sort of like an, “AHA I can do it even if you try to stop me MS, TAKE THAT!” Yes, I refer to my MS as a third-party. Because while it is a part of me, it doesn’t define who I am as a person or my capabilities. Because if I let it do that, then I give it full control of my life.
We are grateful to our caregivers and loved ones
So, for those of you out there who are caretakers or loved ones of someone with multiple sclerosis: we know you are there for us, we know we can depend on you. We are grateful that you are there for us, always. But sometimes, we have to be at the front line of the battlefield against MS.
I also feel that overcoming an obstacle that MS threw in my way helps build my confidence. It doesn’t make me feel like such a burden - even if it’s a small accomplishment, because they all matter at this point. Multiple sclerosis can take so much away from us that we took for granted in the past.
We're angry at MS, not you
Let me also apologize to the loved ones who try to help us out, both in the past and probably in the future as well. Know that if we get an attitude with you when we are trying to do something on our own, and you have offered your help, our attitude/anger is not directed towards you at all. Please know that. The anger is directed at multiple sclerosis.
But we have to ask for and accept help when we need it
The reality is, one night we went to bed...and the next day we woke up and life was never the same. We’re on an ‘emotional roller coaster’ with no end in sight at this time. Now, for those of you reading this who are also MS Warriors, please don’t be afraid to ask those around you for help when you need it. I know, I know, it’s hard to admit defeat...especially if you’re as stubborn as my husband says I am. But there is nothing wrong with asking for help when you need it. Trust me, I’ve flat refused to ask for help when I should have, and I paid for it with increased severity of symptoms for about a week following the incident.
Don't be stubborn
So, take it from someone probably as stubborn if not more than you, and just ask for the help when you need to. It’s not a sign of weakness or worthlessness or defeat when you do ask. It’s a sign of the strength you have that you aren’t giving up; you just need some help along the way.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: