Forum

Looking "normal" curse or benefit?

There are times for some of us, presumably while we are not using a walking aid or a wheelchair, or even walking where we are standing still talking to a stranger, in a queue, in a crowd, at a restaurant etc where we appear normal. (usualy between walking or between relapses).

A walking aid, a wheelchair, or something visibly different may warn others we can’t quite move as expected but without those visible indicators we can appear “normal” to others. Then there are people who use movement aids, who would probably argue it’s a benefit!

Given I’m relatively new to the condition sometimes I’m left wondering if I’m lucky that not everyone notices I am ill (i.e. I could be worse) or unlucky when people look/talk to me like I’m a liar/lazy. (feel guilty)

There is also that look, you know the one, the…“what the hell is wrong with you?” look

Your thoughts?

P.S. I’m baking a cake so…

I think it is a benefit for the most part. The few people i have told who don’t know me or M.S. that well have taken to talking to me in a baby voice and calling me cute names when i aint feeling well. I feel like punching them! I like to be seen as a Kate, not as a person with an illness as most people are a little scared of ill people. Is she dying? Does that mean she has learning difficulties? Should i shout everything at her? i.e. “ARE YOU OKKKKAY THERE LOVEY?”

Arrrgh!

Although when my legs are having a wonky day and i am heading down the pavement at 9am and people think i am drunk or insane i do want to shout at them “I have M.S.!”. Infact i did do this the other day when i got in a taxi and he tried to make me leave believing i would throw up in his taxi as i was drunk. Sure shut him up.

I have a close friend who recently broke his spine and is now in a wheelchair and it is heart breaking to watch people talk to him like he is stupid or a child or mentally hanicapped. So when i see this i feel so lucky that this doesn’t happen to me all the time. But at the same time, people who act like this around wheelchair users are pretty stupid themselves and very ignorant and i also quite enjoy challenging peoples ignorant ways of thinking so…

To answer your question…i dunno

Kate x

Double-edged sword!

I’m relieved to think I can still “pass for normal” - although I do feel that’s exactly what it is: a kind of bluffing, almost.

But it does make it very hard to convey to anyone why you have difficulties - or even that you have difficulties at all.

A broken leg, in a plaster cast, is easy for all to see. It will be readily understood there are some things that person just can’t do, or only with great difficulty.

But with me, I find it very difficult to explain - even to myself, sometimes - why certain things are a no-no. If you say: “No, sorry, I won’t be able to do that” (e.g. something that involves heavy lifting, queueing for an hour, or whatever), you get some very funny looks, and some rolling of eyes, if there’s nothing obvious to explain your difficulty.

On the whole, I’d still rather it not be obvious, I think. But people - including friends and family - do tend to forget there’s any problem. E.g. a friend, without thinking, might head straight for the upstairs of a double-decker bus, with me saying: “No, no, STOP - I don’t want to go up there!”

Tina

Oh, it’s a blessing, I think - but we all have enough experience of life to know that every blessing is a mixed one!

Alison

x

Recently when i was at Anfield, i went up to a steward outside the ground and asked about my disablity card, seat details etc, he looked at my wife the me, then said “who’s disabled?” I said,“me, i’ve got MS” but i got the impression that he was saying that i was bluffing but he then was very helpful to be honest…

I don’t know whether I look normal or not but I feel normal, whatever normal is, and I don’t care what anybody else is thinking. Generally I don’t tell people I have ms. Why should I? Plenty of people I see every day have issues, some physical, some mental, but they don’t broadcast it. It is a matter for me.

Mark

I get annoyed when people overstay their welcome knowing Im worn out, some dont perhaps thats why they overstay even when Ive dropped numerous hints, when I wobble they look as if to say shes had one too many and then when on scooter or using stick they accept Ive got a problem, mainly because I wobble or look like Ive had a stroke. However Im sure there are those who feel Im swinging the leg and perhaps should be working down the pit or something. Best to feel honest with oneself and know the reason we sought diagnosis is because we could no longer do what we did previously. After all people do not see us limiting our lives so we can just function, never mind live our lives.

It takes time and for all those ignorant people around leave them in their ignorant bliss because it takes energy and time to explain our condition by which time we usually are so fatigued we have to pay to educate others. I would waste my breath.

Know you are a very special person, youve got a disease which is rare so therefore not many will know what its all about. If you can be bothered explain, but I find it easier not to. Those who care to get to know my problems AND HELP, are rare.

Yes it is bloomin annoying sometimes but Im past that and just done care anymore because I wish I was back to my normal self but arent and Ive got mri, lp, ver and scans to prove my diseases - both incurable and incapacitating. Anyone who can prove otherwise - please do, your welcome.

x

See I knew “benefit” didn’t look right on the title!

See I hate telling people, I feel like I’m begging for sympathy or to make people feel sorry for me, I also think saying “I have MS” isn’t always any help since most people are blissfully unaware what those letters mean. People usualy nod politely but I think most of the time they have no clue.

On the other hand, when we get annoyed (not you specificly) at people not understanding, thinking we’re lying etc. Are we not at fault for not educating them or at least explaining the basics?

There are no doubt a million conditions out there I am ignorant of, I only know about MS because I have it. I can’t really blame people for not knowing the specifics. Like it or not humans are visual, we base our assumpions on appearence first.

Anyway just type/thinking out loud, thanks for the replies ya’ll

Well, if somebody bothered to spend time thinking I had had one too many, the chances are that they would be right, and usually way more than one!

Yeah, I’m not saying that isn’t sometimes the case. Just not EVERY time.

Kate

Definitely a double-edged sword. When I first got my blue parking badge a couple of years ago, I went to a shopping centre, wasn’t feeling too bad so I left my stick in the car, but parked in the disabled space cos I knew that I’d need the car to be close when I came out of the shop - a man who was driving out of the car park actually felt the need to stop his car and shout at me because I didn’t look disabled enough to be using one of those spaces.

Last Saturday, I had a night out, I now use the stick all the time, and don’t get up to dance, especially if it’s busy, so I find somewhere to sit. The chair I was in was a little too low, and I had to be helped out of it when I wanted to stand - a passing random lifted me up, then saw my walking stick, and was quite taken aback, he admitted he’d thought I was drunk (diet coke does not usually have that effect). People are a lot more patronising to me when they see me with the stick (esp cos I decorate it with fairy lights or flowers), and I can see that they are a little surprised when they realise that the disability is in my legs, not my head. But I’d rather that they could see that there is a problem, not just assume that I’m drunk because I’m stotting about all over the place. Obviously I’d rather not have to have the stick at all, and before I needed it, I was actually not that bad, I didn’t have the energy that I had before, but that was more easily dealt with, and I didn’t have to go explaining myself to everyone either because it was more invisible.

Luisa x

A benefit, or blessing, definately. I can’t abide pity, I hate anyone knowing there is anything wrong with me, if someone says you look well, I’m delighted! regardless of how shitty I nmay be feeling! I hate it when someine says, ‘you don’t look well’, especially as I always make an effort to put oin makeup, nice clothes etc, well, at least to make the best of myself, I’m no glamour queen! I have a friens who takes it as an insult if someone says they look well, and hardly bothers with her appearance, especially if she feeling down/poorly, so nobody makes the mistake of thinking she oki! I feel sorry for blokes who can’t use makeup and hairdo’s to brighten themselves up. When my hands don’t work properly, I can still do a bit of lipgloss, and get my eyelashes and brows dyed.

I read ‘blessing’ because that’s what I had expected to read. Funny how the brain plays tricks like that.

A

x

I look good when out and about because I only go out when well enough. I do use a power chair which also has an elevation element. It is good fun as if someone ignores me I can get upto their level and in their face. I have developed a nice line in arsy (can I say that on this site?). A friend who uses a scooter is a hoot and has many a time pretended to be an idiot so that the person who has forced their assistance (unwanted) on him end up going through a huge pantomine. He delights in thanking them at the end in a sophisticated and correct manner.

Fatigue and pain can make me short with people, I try to be understaning knowing they are unaware of what I have to suffer. Pain and fatigue are a nightmare but it is important for me to remain positive and as relaxed as possible so getting angry is like harming myself. Hyperacusis, Allodyna, Reynards, Osteoperosis and SPMS is a lot to cope with but the single thing that limits my life is the inability to cope with noise. I no longer shop because of this so do not have to deal with ignorant, rude or abusive people. Perhaps the noise level in shop affects others and that is why their is so little patience in the world?

Anyway, onwards and upwards.

Cheers

Moira

I’m glad I look good but that meant I got reported for Blue Badge abuse!!! You can’t win can you!

Sue

Having spent the last year being told by my mother,you look shocking,dear God above you look terrible,you poor girl,your life’s passing you by,are you using eye cream? Because at your age you can’t be too careful,I now realise it’s much nicer to be told ’ you look well '.

When I did ’ look well ',I often felt terrible inside with fatigue and pain, as well as being partially sighted, so I didn’t always take it well.

Enjoy it while it lasts,xxjo

I think looking normal is a benefit.

I look normal when I sit down - sitting is normal for me - I’m in a wheelchair.

;-))) Mary

Oh dear, I’m afraid this did make me nearly cry with laughter. Mothers, eh? Never knowingly outdone in the, ‘right but not helpful’ department.

Alison

x

Holy Moly. I get so angry but love to make people feel bad for their mistaken ‘cut-eye’ read my toilet card rant for tips how to seek revenge (I jest) on those so narrow minded they can’t see past a great hair cut and a fabulous pair of shoes.

http://thefashionablyill.blogspot.com/2012/02/toilets.html

I had the same issue at the airport in regard to a wheelchair “you, need a wheelchair, PFFT”, “I have MS, is that your manager over there?” Cue idiot attendant apologising profusely.

Take it as a compliment but don’t let people walk all over you. Power to the ill, especially the good looking ill. We brighten up the waiting rooms of hospitals all over the world. Ha.