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What They Just Don't Understand


Thursday May 10 2018 11:00 AM

This week, in a letter to her nearest and dearest, Willeke Van Eeckhoutte puts down in words how she really feels. “What do you want me to say?”

Dearly Beloved,

What do you want me to say? What is it you don’t understand?

When someone like you says, "Well, what do you want me to say?" during moments when I feel less than cheerful, it sounds like a rejection. Not just of me, but of your understanding of what I, and we, have been going through for the past 13 years.

After all this time, all the wisdom we have gained, we could be the writers of the largest MS encyclopaedia! Instead, being asked that question sounds like a betrayal. It’s like you’re using the illness I never asked for as a slur against me.

The truth is, I could write you a hundred different letters and a thousand expert explanations about my symptoms and my thoughts on all those shiny plaques on my MRI images. Nonetheless, I often think, "How can you possibly relate to my life if you don’t have MS?But, with all its intricate, demeaning and unpredictable symptoms, how could I ever expect you to?"

The answer is, you honestly cannot know what it is to be me, and this is not my rejection of you, far from it.

But, I do need to plea for your insight, patience and empathy.

Just as I am struggling to find the words in this letter, MS is an ever-changing plotline that forces me to reinvent my life’s storyline as we speak. 

When I snap at you, I don’t mean to. More to the point, you were probably not the problem. Like when slamming a door in anger, the doorframe, the wall or the house aren’t ever reasons for the action. 

Sometimes I am absolutely worn out, totally exhausted because of my illness. This exhaustion feels even more pronounced when people express how they don’t understand me. I’m tired of the illness that has me acting in ways I normally wouldn’t. 

I carry an imperfect brain because of illness with a fickle revolving-door manifestation. It causes me to feel claustrophobic within myself. I know that keeping up with an ever-changing illness is as challenging for you as it is for me. I also know that there are times when you’d rather be somewhere else instead of being near me. What I want you to get is I don’t wallow in self-pity nor do I jump up and down in elation because I was diagnosed with this obnoxious illness.

MS has impacted so many aspects of my life, it is part of what makes my life what it is today. Makes me how I am today.

Flawed? Yes.

Fickle? Perhaps.

Happy? I sure am!

Hopeful that you would understand me? Absolutely. 

What I ask for is simple but it isn’t easy. You are part of my walk through life and am glad to have you with me. When you feel exasperated by what I say or do, please step into my shoes with me for one minute and we can work out what’s really going on.

Lots of love,


Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me 

Author: Willeke Van Eeckhoutte

Tags: ms, multiplesclerosis, letter, family, story



Thursday May 10 2018 12:35

Bravo Willeke! You said it.


Sunday May 13 2018 10:46

Thanks, Joan! Straight from the heart!

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