“You don’t look ill.”
My friend said that to me the other night when I complained of feeling exhausted with fatigue. I may not look ill but sometimes I feel dreadful and this must be worse for MSers who don’t have obvious, visible symptoms like balance or mobility issues.
If fatigue is your main symptom people are never going to understand how bad you feel and will often suggest you have MS “mildly” compared to other people.
“I’ve got a weak bladder, too.”
This is a favorite of a family member of mine who complains of having a weaker bladder after having two children. I sympathize with this, as I’ve had two children, too, but the difference is she can hold it long enough to get to the bathroom! She doesn’t have mobility issues making it harder to physically get there on time.
Lots of MSers have at least one horror story of not being able to make it in time or not being able to go when they get there. We have to phone restaurants or bars in advance to make sure the bathrooms are accessible or not up a huge flight of stairs, and long car journeys are fraught with anxiety and panic!
“Oh, I know how you feel.”
No, you don’t.
“Disabled parking badge? You’re so lucky!”
Lots of able-bodied friends say this to me and it makes me cross! Now that I have my scooter, a disabled parking bay nearer to the building isn’t as important, but the fact they are wider is essential as I can’t squeeze between parked cars to get in and out without the extra room.
The other day I parked in a bay that was on a slope and had such a nightmare getting my scooter out as it kept sliding downhill into oncoming traffic while I struggled to get on!
“Have you tried...?”
People do this to me all the time. Someone suggested I try acupuncture the other day and although I have heard it can help with some symptoms, it’s not going to cure me overnight!
Someone else handed me an article on stem cell treatments. I’m aware of how close they’re getting, but this is not available to me at the moment so don’t need endless articles about it! When I can access the treatment let me know.
Despite all the ill-advised comments I receive, I usually smile sweetly and agree with people – I know they mean well!
