I’ve noticed that because I don’t always “look ill,” people assume I’m doing fine. They don’t see the fatigue, the brain fog, or how much planning goes into getting through a normal day.
Has anyone else experienced this? How do you explain the invisible side of MS to friends, family, or colleagues without feeling like you’re constantly having to justify yourself?
Hi @Snowyzlala . Just wondering why you assume that people think you are doing fine?
You could just refer them to MS Society and MS Trust websites?
Not sure what we are meant to say, @Snowyzlala. Are you looking for sympathy because we’re all in the same boat on here. Just trying to be the best versions of ourselves. I really don’t give a flying **** what other people think - my battle is very much internal.
Just to echo @GCCK thoughts I am wondering you feel you have to justify and why?
Hi @Snowyzlala
My reply probably won’t help you at all.
Like almost everyone on here, I do get fatigue and brain fog. I’m quite lucky in that everyone closest to me is aware of it(partly because, if I’m stubborn and push through the fatigue and tiredness too hard, it triggers my seizures).
I do still look like the old me - a regular healthy person to everyone else which is the way I like it so, I mostly mask my difficulties and keep them to myself. It’s maybe not the best way to go about it but, it works for me for now.
I don’t think there’s a right or wrong answer. You just have to take your time to find a way that works for you 
All the best mate.
Jon.
Used to annoy me, now I make them go ‘Oh ****!’
I’ve been confronted and just random comments when I leave the disabled toilets. At which point I open my bag and wave a catheter at them whilst telling them to go use one, hygienically, in the normal toilets. Rather good feeling when you see their faces at the instructions I give along with the length of a catheter.
As for energy levels that’s a give them the spoon theory. If that doesn’t sink in I go with how long do you brush your teeth for? I’ll only be doing that if the battery is charged. If battery is flat my arm will tired long before 2 minutes of manual brushing.
Took me a week to do the weeding in my back garden a month ago. When I told my brother how long it took me he responded with ‘at least you got a week to do it, he had to do it in a day.’ At which point I sarcastically said ‘So glad you did it in a day, as got the other 6 days to other stuff. I bet you also cooked something to eat that was more than beans on toast. Talking about food, I bet you didn’t break a bowl, 2 mugs and a glass either. Oh and talking mugs I made a drink one day and had no energy in my arms to pick it up to drink it.’ his face changed as he realised he put his foot in it.
I’ve had a train worker say I shouldn’t be say in the disabled seat on a train. He hates people doing that when they’re not disabled. I said something like he should be sat in them as he clearly disabled, cognitively. He then tried to argue and put the heels on the seat and pulled up my jeans to show two foot supports and firmly said ‘blah blah blah’ to shut him up followed by ‘look at my angles’. Then I got an apology
I’m not saying do what I do, but maybe some tuff love and bluntness will get it across.
There are more tactful and diplomatic ways to deal with stuff. But ultimately if people aren’t listening to the polite approach, making there assumptions based on you look, some bluntness can be helpful.
A more diplomatic approach may be remind them that they really shouldn’t judge a book by its covers or looks can be deceiving.
It is difficult - particularly for those of us who are still working on cultivating the appropriate ‘naff you’ attitude to lack of understanding among the civilian population Work in progress!
I do like to see someone that still has the will to lift their fists under these circumstances 
Try to hold onto that spirit as long as possible. Just be careful how you let it fly these days. You can be the master of your own self control.
Keep your chin up mate 
Jon.
I’ve gone the other way.
Whilst fiercely independent, when people offer help (and they quite often do), I usually say very politely “no thanks, I’ve got it, but thanks for asking. Next time I might need help”. I feel it encourages them to offer again whether it’s me or the next person who appears to need a hand. For the record, on the odd day I have said yes when I was having a bad day.
Conversely, it’s never a good idea to be argumentative!
I am quite careful about when I make a scene and by make a scene do mean make a scene. Say and do stuff loud enough to attract witnesses.
That’s for the witnesses,
maybe they’d record it, as they do nowadays,
maybe some would assist, if needed, there are still some good people out there.
And finally witnesses = maybe, just maybe, they’d learn something as some of those witness could very well have thought the the same but not opened their mouths.
On a funnier note with my replying to an ignorant person. I’m going back a few years but during a relapse I was having issues walking and while struggling through it I still went to grab a few things from the supermarket at 9am. I definitely looked a quite drunk. At the self serve I had scanned a bottle of amaretto and was waiting for a member of staff to authorise it. As she approached a guy commented and said its a bit early for more of that aren’t it? To which I turned and said I need something to put on my cornflakes.
The member of staff now at my till laughed at that. The guy paid and walked off. The staff member removed the security tag and then we had a little humorous chat. She new I had MS along with the fact I haven’t purchased cornflakes there for the 10+ years I’d been shopping there
Good reply
The poor bloke was probably well confused - everyone knows that amaretto goes on wheatabix, not cornflakes
I haven’t really experienced anything like that but, I suppose I’m quite lucky in that my difficulties aren’t visible yet
A purist prefers gin on the cornflakes, surely?
Come to think, I wouldn’t blame anyone for wanting to stage in intervention if they saw me pouring amaretto on my weetabix, though. It would be a mercy, really. 
I’m sat here laughing @alison100 Can you imagine what a new member might think reading these posts from @BazzaBongo , you and me
We’ll have to agree to disagree on that. I could be persuaded to try but only if I’ve had some Amaretto with any breakfast cereal as a starter, main and desert courses. Talking of that I may have a late night snack of Fruit, Yoghurt and Granola with Amaretto when chilling tonight…
@jthatcher I could work with wheatabix though I think Amaretto would go with pretty much any cereal really. Though that may be because it mixes quite well with milk without any cereal…clearly I felt like experimenting 
On a serious note we all sound a little weird and nutty…which lightens the mood. Really has put a smile on the my face. Thanks
Amaretto is practically health food in comparison to gin, admittedly, so you win. Your body is a temple, clearly.
@Snowyzlala sorry if we’ve drifted off-topic. You’ve prompted some good thoughts on this thread, and not all of them concerning breakfast liqueurs. Thank you for asking the question.
@alison100 While I try to eat healthy…ish my body is far from a temple. Too much snacking on junk which I try not to buy but when I do its gone within a day or 2…
I completely understand what you mean. I suppose sometimes we feel the need to justify ourselves because we worry about being misunderstood or judged, even when we really don’t need to explain our choices to anyone. It’s something I’m trying to remind myself of too. 
Yes, that did happen a little didn’t Allison
Sorry @Snowyzlala I also didn’t mean to disrupt your thread x
It’s a good thread and, it’s been fun today - for that, I thank you
Jon.
Hi @gooddoyouwork , a long rambling reply for me which is mainly me just thinking aloud about my own situation but I hope it is of some relevance to your original question. There is someone called Ben Hofmeister who posts articles on Multiple Sclerosis News. He was a Marine and Green Beret in the US army but developed primary progressive MS which now affects him a lot. I find that his posts are always interesting and provide a mixture of the practical and ‘philosophical’. Some years back he posted his approach to living with MS, which reflecting his military training, was to stay mission focussed except that instead of staying focused on a military target his target was to deal with MS as best he could. From everything from treatment to, diet, exercise family, friends and socialising he had aims . Stripped his life down to the things that are most important and if there were any problems then how best to deal with them. So, perhaps if he thought people were overestimating what he could do he might have dispassionately thought through - do I want to change their mind and attitudes and if so , why , what outcome do I want and what is the best way of achieving that