I’m in my late 20s and I’ve been recently diagnosed with RRMS.
I’m fairly new to it all, but the main symptoms I experience are fatigue and muscle weakness. I’m lucky that it doesn’t directly affect my ability to walk, but I do get easily tired, especially when standing up for longer periods.
Does anybody else get severe imposter syndrome with their MS? Others living with it have to use a wheelchair or a cane, but because I look ‘okay’ from the outside and I’m young, I feel weird about asking for help, especially if that means needing a seat at a gig or on public transport, or other accessibility help like discounted travel.
I guess I feel like others have it worse and it makes me feel judged. It’s really difficult and a very lonely experience. Wondering if anyone else has had this?
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Hi Erica.
I hadn’t really thought about it before but, I do understand what you mean.
I’m a 47 year old bloke and, I’ve also recently been diagnosed with RRMS and a couple of other bits yet, outwardly I’m still in decent shape and, it’s not easy to spot that I have anything wrong with me (I will never wear a lanyard, badge or T-shirt to advertise the fact. I do have a companion bus pass now though - it’s very useful 
Yes, others do have it a lot worse than us but, many others also have an easier life now. You’re certainly not an imposter - you’re a young Lady trying to deal with being dealt a bad hand. Don’t ever feel bad for trying to crack on and taking care of yourself as best you can. Life is hard enough without taking any assistance that you may need. Now is the time that you really need to look out for yourself and know your rights. It’s not an easy thing to adjust to but, you will in time
Try to be happy mate x
Jon.
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Oh @erica.g don’t feel like an imposter! What other people are experiencing doesn’t make your difficulties any less.
I’ve had MS for around 19 years and yes I look well but do have trouble walking . I don’t think you are an Imposter in any way and quite sympathise with you. I’ve also found that people are very kind in providing support and help on public transport, cafes etc etc
So, If you are struggling at all get all the help you can
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The good news is that you are not alone. The bad news is that, if you are that way inclined, I’m afraid it doesn’t go away even when (like me) you’ve had MS for a long time and not all of the disability is hidden. I have to say that in my own case it continues to fuel wrong-headed approaches that make my life more difficult than it needs to be. I am also inclined to think that people are rolling their eyes and judging md for being lazy or useless when in reality that’s probably my own baggage that I’m projecting onto them,
So ‘don’t be like me’ would be my advice, but I have no idea how to make that happen!
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Thanks Jon, this really helped me to look at it from a different perspective, it’s all such a big adjustment, and I know it will take me a while to figure things out. Grateful there’s such a lovely community with people like you in it! X
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Thank you Hank, this fills me with hope 
I hope you’re doing okay.
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Hi Alison, you’re so right about this, so hard being your own biggest critic. When the reality is, people probably aren’t even thinking those things. I’m glad I’m not alone and let me know when you make it happen because I’d love some tips!!!
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Maybe I’m just and optimist and/or naive but I find that people are generally very kind, helpful and actually want to help.
I can walk but need a scooter for anything over 100-200 metres . Not so long ago I was on my scooter trying to get up a kerb . I could have done it but someone actually crossed over the road to help me . Amazing!
There are a few grumpy, miserable people of course but lots of people seem to want to help
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It might be worth asking your question over at Shift.ms, as they tend to have a younger membership and may share your feelings.
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In some ways is definitely easier when one is obviously hampered and if one is also old it’s a bonus. Now I’m a white-haired old bird with a couple of hiking poles, everyone gives me a wide berth and is considerate and happy to help. Folks know what to do about that sort of obvious disability and can offer assistance with confidence and without fear of offence being taken. Even now, I find dealing with my invisible disabilities harder and find that others find those harder to understand to and to make allowances for.
When a was a newly dx 38 year old and most of my MS troubles were invisible ones, it was a whole lot harder to find the right balance between soldiering on as if nothing had changed - as one must because life goes on and there is work to do and a house to run and bills to pay - and accepting that actually quite a lot has changed. It’s very disorientating.
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hey erica,
I hope you’re well. just wanted to echo others’ thoughts here. I’m 32, recently diagnosed RRMS, and appear to all intents a fit and healthy young guy. however, the symptoms I deal with (while broadly manageable) are difficult, debilitating, painful - sometimes frightening - and can also include extreme fatigue. I find it hard knowing how grateful I should feel for what I have against immense frustration at the things I struggle with, or have lost. given the surreal nature of my symptoms, and the diagnosis itself, I can also find MS a lonely experience; in fact I find the mental battle as difficult as the physical.
this is my second major diagnosis, and so at this point I supposed I feel less inclined to feel awkward about asking for help, trying for PIP, or taking advantage of cheap theatre tickets, for example… if I have to deal with it daily then I don’t feel so bad at looking for aid, or the “silver linings”, I suppose.
above all, I feel you should not feel guilty or embarrassed about looking after yourself and your wellbeing. and I guess that with it comes an imperative to try to look out for the wellbeing of others to, where you can.
look after yourself, go steady, and enjoy things!
james
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Hi @erica.g and @jamesdjgale and all the others that have commented (some lovely familiar names to me 
)
There is so much I can relate to in your post Erica and in your comment specifically James. You are not on your own.
On the outside I look like a healthy 45 year old woman with my own business, a house and a family.
On the inside my legs sometimes feel ‘empty’ and feeble, and the backs of my knees ache with no apparent cause and I often abruptly ‘run out’ of energy, despite living quite a ‘small’ life - I work very part time (though my job is pretty draining) and I don’t do huge amounts socially. I am also autistic and that means that I get overwhelmed quite easily.
I really feel that imposter syndrome sometimes and wonder whether I am just making a fuss and other people would just get on with it. But I reckon that other people don’t live in my body with my level of fatigue and issues. And the best thing I can do is be kind to myself.
I posted on my local MS group what’s app group the other day about getting a stick. I don’t need one yet, but wondered if it might help when my legs feel feeble. It’s quite the mental adjustment though to think of myself as ‘a person who uses a stick’ even if only occasionally. The group were very kind and one person suggested thinking of using aids like this (or any other kinds of support for that matter) as a way of making your life bigger, not smaller.
Anyway, I’ve waffled on enough. I hope a little of that may have been helpful. Thank you for letting me take up space to process my thoughts and feelings.
Wishing you all the best, you deserve support.
Alison x
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I thought about this thread on Thursday. I was going into the little Tesco round the corner and moved to the side for a lady with walking poles that was leaving the shop. She asked me if I could open her bag of mints. Her hands didn’t look too mobile. I showed her my left hand doing it’s own thing and said, yes I reckon I can get in there. I got them open and pulled the top off because those bags are a bugger for splitting down the side and losing their contents. For a moment it was just nice to be the one to be asked for help again. Even before all this madness I never did mind helping someone out when needed - I think most people are genuinely the same. Even if the struggle isn’t too obvious 
Have a good weekend all x
Jon.
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