Last reply 2 months ago

So as I was diagnosed when I should have been getting my life together and thinking about what to do for a job and where to live and study, it got pushed to the back of my mind, while I had to concentrate on my health which kind of leaves me behind a bit, still at home at the age of 30, while previous friends have settled down with places to live and had some kids, gets me down a lot, not that I every really complain, and I am lucky in a lot of ways, lots of support from family, but I’ve lost a lot of my confidence that used to spur me on to get anything done!
And I just feel pretty alone in the world right now regarding this illness that’s been a part of my life for about 11 years.
And then I always feel like a whinge which makes me feel even worse, vicious cycle I guess!!
I don’t know what to do to feel better!!
Sorry for this visual break down going on here!
Take Care xx

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2 years ago

If your in England they have several meet and greet groups of young MSer’s. In the US churches have meet and greet type programs for the young adults. You just need to get out there and fight back, when I was diagnosed with MS I started working more in my pottery studio not less. I wasn’t going to let MS take away from me something I had worked so hard for. I still work in my studio and getting ready to open a internet store. My husband and I are getting ready for a long vacation at the Grand Canyon area. I know I’ll be worn out the first day but you have to keep doing stuff or you won’t be able to do anything at all. You may need to talk to a therapist if you can’t find any thing to motivate you. I just turned 64, if I can do it so can you. Potter

2 years ago

I know and can relate to how you feel 100%! I too Have an amazing family and support but, I’m 27, still living at home and becoming god parent and bridesmaid rather than bride and mum! Don’t feel bad for how you feel, you are not alone, not at all x

2 years ago

Hi @lizzy86

It can feel lonely but the more people you meet in this MS world, the more they can help. Have you joined the meet up group on here? These are the people you can learn from and can help.

I think you are worthy of a whinge cos I certainly know that I am every now and again. There are lots of things going on in this MS life and there are lots of people out here who want to help you. I think the good news is that you have found this site and you want to feel better…….you’ll get there. What do you tend to do in your spare time?

Even though it feels like you’ve been left behind, it might only be that your time wasn’t at the time it was for them. Maybe your time is now.

Big hugs

2 years ago

Hi @lizzy86,

I think that there is a serious silver lining to your story: You have by now a lot of experience of living with MS and the things you can and can’t do given your health. So, in a way, you kind of have a blank slate that may make it possible for you to start building a life that suits you and your needs?

Of course, I can’t comment on your personal live (kids, houses, marriage) but in terms of where you would want to go in terms of a career, you could look into training for a profession in a way that you can get through the training on your own terms and which leads to a career that will allow you a lot of flexibility.

I saw the Open University mentioned in another thread – they are fantastic in accommodating non-traditional learners who face all sorts of challenges in life and their stance is that it doesn’t matter which qualifications you have when you start but what qualifications and knowledge you have once you graduate – i.e. it doesn’t matter if you had to interrupt school or any previous training and do not meet the usual requirement of 3 A-levels.

I think there may be other things you can potentially do, I haven’t found many of them yet but am certainly looking out for my own options, too (i.e. possibilities of flexible working, freelancing, fostering).


2 years ago

Dear @lizzy86

I agree with all the gang here: have a good whinge (I love one every now and then!) and then think about what you WANT to do and how to get there. I started university when I was 31; I worked like a demon, thinking I was behind the ‘kids'(!) I was studying with…not so at all (I was first in that particular degree course each year).

Things will unfold as you follow the path you want…you might meet someone special, you might decided children are/are not for you etc. Enjoy your time! lucyh xx

2 years ago

PS Dear @lizzy86

I meant to say that my confidence has been up and down (walking into a lecture theatre was scary after so many years of not being at secondary school etc.). If it helps, I sometimes feel we are the only ones who notice how lacking in self-confidence we are. When others see us they probably think we are just fine. I think we do need to ‘fake it til you make it’.

Take care, lucyh

2 years ago

Thanks to all that commented on my post, I feel heaps better already, I did start a new job a few weeks ago, maybe the more sensitive of us doubt first, act later?
But it is all much appreciated!
Lots of love x

2 years ago

@lizzy86 I think you are spot on there – I am learning the hard way that living with MS means learning to live with unpredictable knocks to your confidence in yourself, your capabilities and your body.

Thing is, everybody has some kind of set back eventually even tough unfortunately we MSers have more of them and they will never fully go away as they may for other people. Therefore, whinging sometimes is a must but my ultimate goal is to be as much of a role model as I can be 🙂

1 year ago

Hi @lizzy86

Sorry I’m a bit late to the conversation haven’t been on here for a while, I got diagnosed in 2014 and thought I could take it by myself but I was wrong, I saw this and could relate to every word.

Even tho as well I have a great parents and sister with her kids who dowt on me I still feel lonely and don’t no what to do, I’ve lost all my confidence, I find it hard to interact with people it’s took me weeks to reply to this
I not good with words and I worry to much😊.

Thank you opening up my eyes
Anyway Sorry for the rant and hope u finding the wy to make u feel better ☺

1 year ago

@thoughtfultraveller is spot on! You may be slower at starting a career but you are also less likely to fail at what you attempt. There are so many posts on shift about people having to give up on their job or studies because their symptoms make things too difficult. I can only imagine how soul-destroying and what a blow to confidence that failure to cope is (and of course the effect that has on the MS). In my book, your way is less stressful and more productive.

2 months ago

Hi Everyone that posted in reply to this entry probably about a year ago, I’m so sorry, it is so good to know there are people feeling similar to me, and I hope everyone is getting on ok in their own way, sometimes with more compromises than the next person, but we are all doing our best , right?
Take care, from Lizzy86

2 months ago


How are you doing a year later?

I’ve had the same phase. After feeling sorry for myself, considered quitting my job and stopping the course I’m on. Also – had a terrible one-night stands.

A couple of months later – I’ve focused more on my own small company, rescheduled the course for February and dating a great person (to my surprise, the MS didn’t scare the shit out of him).
Sometimes it takes more time, but we’ll get there. And I’m sure you will as well, people with MS are the strongest people I’ve ever met, it’s uncanny. Something changes when you start dealing with the DX, it’s kinda amazing in it’s own way.

2 months ago

Hi gijs,

I think I’m doing better than before, I think!

And if all else fails, hope for the best, prepare for the worst?

I changed my medication a couple of years back and was the best decision ever, I feel much better, still struggle with the emotional side to it, but you cant fix everything at once I guess!

Take care for now,


2 months ago

I used to feel the sme way you do when I was in Saudi Arabia and even worse when I moved to the uk to study

Untill I tried to litteraly revice my wau of thinking before having Few words supported
I used to repeat them a lot in my mind
Never lose a challanhehe sometimes i challange MS thinking of MS as an individual who’s trying to knock me down so i push myself standing with my head high

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