8 Things MS Patients Don't Want to Hear
People react in all sorts of ways when you have a chronic illness. Some avoid eye contact and don’t talk to you out of embarrassment or awkwardness, while some make a point of including you and making you feel welcome.
Others will offer well-meaning advice in an effort to “fix” the problem. I always feel mean if I’m inwardly groaning at these gems of wisdom, as people are genuinely trying to help – but there are certain things an MSer does NOT need to hear!
“You’re so brave.”
This is not only infuriating but also extremely patronizing!
I go to a local drama club with my daughter on a Monday and I usually ride my scooter down there to give her some exercise. The other day one of the grandmas made a point of telling me how brave I am for going out on my own on the scooter.
I know she means well, but what else am I supposed to do? I’m not brave or inspirational for using a mobility scooter to get around. I can’t walk very well so would be lost without it, and the alternative is to stay at home out of sight and let my daughter miss out.
Interestingly, it’s members of the older generation who usually make comments like this and I wonder if that’s because younger people are more tolerant or disability aware, or do they think the same but know not to say it?
“That scooter looks like fun!”
Someone said this to me the other day and I couldn’t resist replying, “Oh it is, but I’d much rather be able to walk.”
I immediately felt guilty for making her uncomfortable and laughed it off as a big joke, but inside I was screaming! I miss being able to walk every day and the effort of getting out and about is immense sometimes. Although the scooter has changed my life and given me back some independence, I would much rather be able to do what everyone else takes for granted.
“I get tired, too.”
This one’s a classic and highlights just how ignorant of fatigue most people are. People with MS get tired, but the crippling fatigue most of us feel is not tiredness. It can feel like even the smallest action, like holding a knife and fork to eat, is a monumental effort. Every movement is like wading through treacle and rest will not necessarily help.
I’ve woken up after a long sleep and had to drag myself out of bed, feeling like I’ve had no rest at all. And it can hit you at any time, descending like a fog to ruin your plans. We call it tiredness but only because that’s the closest “normal” human condition to compare it to.