I was diagnosed with RRMS a year ago (at 28 years old, female) and started treatment straight away. However I’m still unable to accept that I have MS, I’ve done a lot of research, spoken to a friend who is also on the same journey and and only 2 friends know I have this. I would have thought, receiving the treatment through Infusion would help me to accept this but it hasn’t. I don’t want to put a label against me as I am extremely independent and don’t want anyone to look at me differently.
I don’t know what I need to do to make me realise I need to slow down and accept this diagnosis, has anyone got any advice to help me please, I feel stuck.
When I was first dx with multiple sclerosis in my teens, I just put it at back of my mind and carried on, I didn’t feel disabled at all. Pedal to the metal all the way!
In my late 30s, that’s when I had no choice but to ease off the gas; mobility had been stymied by then --not saying that’s definitely in store down the road.
If you feel well again, after treatment, don’t let MS dictate what and what not to do or prevent you from living your best life.
Hi pk, I’m sorry you have this in your life at such a young age. It is hard to deal with at any age.
I’m 71 and have had PPMS for 25 years. But it took 22 years to be diagnosed.
Accepting MS is very important. I believe it’ll save you precious mental energy. It is also important to have good support from family and friends.
Look after yourself. Jesus helps me every day.
What does acceptance look like? Feel like? I have no idea myself.
Do you feel you are at a stage where you need to slow down because it is impeding you in some way?
My life is the same now as it was before really. There have been some changes I have had to make, such as my job, but I’m ok with that. The job I do now has taken a considerable amount of effort to learn, not something I previously struggled with, but that’s ok, I’ll get there. Beyond that, no one would know I have MS. I don’t keep it a secret, but don’t shout it from the roof tops either. The only reason my boss knows is because they put me down for shifts on my injection day at my injection time, so it was easier to give them a list of my future injection dates so that didn’t keep happening.
I guess it depends how your MS affects you, because as you already know, it affects us all so differently.
Thank you all for taking time to read and giving me advice.
I’ve found these past 6 months the hardest if I’m honest, just in every way you can think of . There’s many people around me but yet its lonely.
Theres changes happening in every direction at the moment and I sometime think If people knew would it give me an easier life to concentrate on me but at the same time I’m not ready to tell people.
Don’t force it. Your subconscious will be working overtime to help you assimilate that life-changing news, so do not think for a moment that you’re stuck. In my experience, these things tend to go either so slowly that you don’t notice day to day the change in how you feel about your dx unless you stand back and look at it over time, and/or it lurches forward by fits and starts. Either way, there’s no rushing it. You’re not doing anything wrong. It’s just hard, that’s all, and it takes time.
I should also have said that it’s an on-going process. Living with MS is a process of periodical renegotiation. MS pulls its latest trick: you learn to deal with that. And repeat. Acceptance is not a one-time event. Making a good life with MS - despite MS - keeps on demanding your best efforts. And it’s sometimes tough, and rarely neat and tidy. But it the only show in town and definitely worth it.
Hi PK from a 69 year old male diagnosed 17 years ago with RRMS. I hope I can help. Like Foxy I’m wondering a bit about what you mean by acceptance so please forgive me if anything I say is clumsy etc. When is was diagnosed I was overwhelmed by fear. I had seen what MS did to my Aunt and getting my diagnosis opened up a massive dark hole of fear and confusion. Again, please forgive but is it ‘fear’ that you can’t quite face, fear of the unknown and what might be lurking there- a bit like trying to ignore the big elephant or black hole in the room? In my case and as the first months went by with nothing terrible happening I suppose my mind settled.
I didn’t tell my parents or sisters for years and years - mainly because I didn’t want to worry them. I told my employer and work colleagues ( in those days I was convinced that MS would mean that in a couple of years I would be in a wheelchair and MS would soon become apparent to work colleagues). I did tell a few friends but as time went by I stopped mentioning it - it’s a bit of a conversation killer and basically MS wasn’t really apparent and wasn’t affecting my life. My (now) wife knew from day one - she was with me at diagnosis .
I was then lucky that nothing much happened for some years and at times I just forgot I had MS until one day walking round town I found that my right leg wasn’t moving properly . Now , and I hope this is of some reassurance, 17 years after diagnosis I can’t really walk for more than 20 mins and find heat very tiring but apart from that I’m doing OK, still enjoy life , still active etc. MS is a bit of downer and does make many things that bit harder to do but by no means has it been the end of my life. I’m going to guess that with the newer DMTs it could be years and years and years before MS has much physical impact on your life.
I think I sort of know what you mean by ‘label’. 2-3 years ago I started using a mobility scooter for anything around a 30 minutes walk and yes, I was incredibly self conscious on the first couple of times out on the scooter - convinced that people were looking at me with pity! ( in fact what I’ve discovered is that people are incredibly nice, kind and helpful. Quite heart warming!).
My, quite possibly totally misplaced, advice is that you spend time generally and gently trying to work out what it is that you find difficult to accept and if necessary, face your fears. A diagnosis of MS is very scary but bit by bit MS treatment is improving and is so much better than it was when e.g my Aunt was diagnosed ( basically no treatments at that time ).
I hope that something in my ‘scattering’ of comments is helpful to you.
I don’t think you could have put it any better so thank you. Now I’ve thought about it in depth since posting and seeing everyone’s support, it’s the fear of the unknown and the negative stories that my friends know of who have MS. When I told my best friend, one of the reactions was she knew someone who also had MS and sadly passed so that scared me never mind everything else I was thinking about.
Thank you for sharing your story and I’m so happy to hear that you’re okay! reading your story has put at ease somewhat and I think to those family members and friend who knows, the reaction wasn’t supportive, more like ‘oh.’ so I’ve found it hard and I felt that ‘labelled’
I’m trying to find support group locally hoping it will help me to accept that I have MS by listening to their stories, support one an another & just having someone to understand the challenges we all face everyday rather than who’s got it worse for those who don’t don’t understand what we face, if that makes sense.
Hi PK. I do recall that when I told my oldest friend ( of some 50 years!) his reaction was also one of ‘Oh, and so’. He later said ‘sorry , I didn’t know how to react’. Whenever he phones now ( I’m in Scotland, he in London) he always seems to expect the worst and I think that might be the problem for friends - MS is this big scary thing. I’ve sort of got used to saying I’m fine etc and move quickly to asking what he has been up to.
None of my business but can I ask what diagnosis have you been given?
Just some general thoughts: as others have said , I’m still me, still enjoy the same things. Yes some things become a bit more complicated and I do take care when Covid and Flu cases are high. I used to like hill (Munro) walking and can’t do that anymore but enjoy getting out in the countryside on scooters, and still enjoy nature watching. Up until 2 years ago, and at the age of 67 , I was up on the roof relaying ridge tiles ( probably a bit stupid of me ) and I refitted our bathroom on my own ( new bathroom suite , new radiator, retiled etc). So, I know that it’s different for an unlucky few but MS isn’t an immediate ‘ go to jail, don’t collect etc’. It has slowed me down and I wish I didn’t have MS but I’m doing OK.
I once met a lady at a MS seminar called Suki. She’s a long time sufferer and dx back in the day by Sir Roger Bannister, with the use of just cotton wool.
I remember her saying, “you won’t die of multiple sclerosis, you’ll die of something else”. A bit macarbe imho but, she’s absolutely right.
I suppose nobody knows exactly what the future holds so I think it’s probably best to live life normally, as best you can.
Your clumsy friend’s comment took me back to the early days after my own dx. A very young colleague at work - a sweet girl, her eyes brimming with tears - confided in hushed tones that her mum’s neighbour had had that and she died. I was in a state of permanent semi-hysteria at the time with everything feeling heightened and weird (you might know what I mean by that) and for some reason I found this comment hilariously funny. To avoid embarrassing the poor girl, I had to excuse myself and rush to the Ladies to cry with laughter (the two were not ever far apart at that time). Well, here I am, 23 years later, and still doing OK and thoroughly enjoying life, and smiling at these memories of long ago, as you will in years to come. For most of us - the overwhelming majority of us - life does indeed go on.
MS is with me everyday - I was diagnosed with MS 20 odd years ago at 32 but was put on treatment then - copaxone - MS is still with me everyday but I have learnt to live with it and it places many limitations on me, however, I’m thankful that I’m still on my feet and able to do most things, so I guess that is acceptance - many people, including family members/friends have also faced health struggles and some didn’t make it out the other side - it’s an old cliche but take it one day at a time.
As yes, those lovely stories that unthinking people feel the need to tell.
My boss at the time of diagnosis said ….
Oh my friend has that and she’s in a wheelchair, but she’s in her 60s so what can you expect when you’re 60??
My boss was actually 64 at that time.
Not surprising that I left that job shortly after that.
Just remember that someone else’s experience is not necessarily going to be your experience and someone else’s path is not necessarily going to be your path.