Last reply 1 month ago
Living under a real invisibility cloak

So I keep thinking about how annoyed I am about the latest insensitive comment from someone when it comes to this disease. As most of you who have the diagnosis know it is very unique to all of us… since the damage created in our brain and spinal cord is different in each of us, so are th symptoms different in each of us. What makes this comment worse is that this individual had a parent who died from MS related complications. So I’m talking to him today and today was a bad day. It’s my third in three days in a row out of five at work and I’m already running on critical battery life. I had but half an hour earlier been sitting in my office floor (which is private) praying (literally) that I wouldn’t faint or pass out with the dizziness, pain and fatigue I was experiencing. I wanted to go home to go to bed to give in but I refused. Then in conversation this guy says I know three people with MS and [Insert hand gesture of lower level, medium level and higher level] you are here, such and such is there and you are at the bottom. No matter what stage our MS is at I would say it pretty much flipping stinks either way. My brain scan still shows white lesions, as does my spinal cord. I still have fatigue, dizziness, nerve pain, muscle spasms, tremors, reduced sensation in different areas of my body, poor grip in my left hand, constipation, bladder emptying problems but the only one symptom that shows is that I use walking stick. I’ve come to the conclusion that Harry Potter’s invisibility cloaks is pretty s*** and that he can have it back. Some days it just feels impossible to be suffering so much inside and to the world look semi OK… although I’m no model hahaha. I may put on my make up but who wants to look crap outside as well as in. I may put on my very fake smile and chat about something that isn’t MS but that doesn’t mean it isn’t real. I wish people would think before they speak. My sister has MS but our symptoms are massively different. I loathe being compared to her as that just makes me feel even more invisible. I want to be seen for being me and just me, if that makes sense but sometimes just sometimes I wish there was a way of flipping the invisible cloak and laying my scars bare for all to see so perhaps just once they may stop judging me :’-(

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stumbler
1 month ago

@ashia2013 , ignorance is like MS, incurable.

Others just can’t appreciate the struggles we have on a daily basis. Don’t dwell on it. 😉


niteowl
1 month ago

Hey just wanted to say hi 👋 people are too quick to judge, they have no idea of what you are going through.
Aye your right is a Harry Potter invisibility cloak lol 😂 sorry that’s the best description I have heard it’s so true …..
I have just been signed off work for two weeks and I know that I will be criticised as I look fine and they don’t have a clue what’s going on with me quite honestly it’s none of their business. I know they look at me when I lose my balance and stagger, your always tired yea can’t help it …. why are you limping emmmmm pulled muscle 🙄
Funny my sister has ms too but again no-one knows.
I know it’s hard to not let people get you down maybe it’s time with someone like that to just say I don’t want to talk about it you have no idea and it would at least make them think twice about stupid comments
Chin up hun Avada Kravada to the tosspot 🤪


nutshell88
1 month ago

I saved my helf any hassle with people
I’ve never told anyone in my life I have MS even my brothers and sisters told them 5 years ago they were kuds anyway

I’d hate it even more than i hate myself if someone i know looked at me with weird eyes asking
Its hard for me to understand you eat well you dont get angry
Uh that mm
Then they go to their home might talk to each other about me good bad laugh ir even never remember it and come bk to ask again

Id hate them even lik
I prefer not to ldt anyone know and act as if its because im thin altho jts not always obvious on me


vixen
1 month ago

Hi @ashia2013, so I’m the third person in 5is thread who has a sister with MS! I’ve never thought of it like that, it really is like an invisibility or even, like the iceberg, where others only see what’s floating on top. Yes, that’s really insensitive that comment you’ve quoted, like someone is making a professional judgement on an MS pecking order. Hmmmm. It’s really tough, but we just have to learn not to waste energy getting wound up. I am fasting learning to seal myself off from inadvertent stupidity. It’s just a shame that we have to….


sammy93
1 month ago

@ashia2013 what that guy said to you shows how little understanding he has of MS. It was a really unnecessary comment as well. Everyone’s journey with MS is different you can’t compare two people. Most of my MS symptoms are invisible, the only one that is probably visible to others is my coordination but that doesn’t mean I’m not suffering.

Just because he said he knows three people with MS doesn’t mean he understands MS. Don’t let his comments make you feel like the way you are feeling is less important than anyone else with MS. Sending you lots of love xox

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