Yesterday I received my official diagnosis of MS. It was absolutely no surprise to me, I’ve suspected it for quite a while. Plus, all my symptoms pointed to MS and my MRI showed ‘many’ lesions on my brain and spine.
The thing is, all my friends and family keep checking in on me, making sure I’m okay and seeking to offer me comfort and reassurance. I feel completely fine, albeit maybe a tiny bit of concern that the future could hold some challenges. But it’s not caused me any major fears, no crying, no sleepless night, I just left the hospital and carried on with my day.
The reason for my post is, I now feel a little worried that I’m going to have a delayed reaction further down the line. I have struggled with my mental health in the past, and I worry much more about a relapse in that than the impact of having MS.
I guess in the interest of transparency, it’s also fair to tell you that I am on a very low dose of anti anxiety medication, which could also be helping somewhat. But it’s not a case of being numb to my emotions, I just genuinely feel okay at the moment.
I’d be interested to know if anyone else took their diagnosis this way, and if so, did things change as time went on?
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Hi @HolidayGal, I’ve also had a similar emotional journey when it came to finding out about my MS and feeling a little like I didn’t ‘react enough’.
My diagnosis took a long time, so like you, I feel like I saw it coming. By the time I had the official label, I’d already done a fair bit of processing, which took the bite out of the official confirmation.
I wouldn’t worry too much about a ‘delayed reaction’ - if you do have one later down the line, that’s absolutely fine! You can process your condition in lots of ways. Sometimes our reactions don’t hit the normal ‘beats’ that others might expect, and that’s fine - really lovely to hear that people close to you are rallying for you regardless. Everyone’s journey and reaction will be different, so I say just enjoy the extra fuss for now and take things one day at a time!
I really expected to completely fall apart and have definitely had real moments (especially when I realised my best case scenario might be to be on meds for life unless any other treatment becomes available…!), but my symptoms aren’t super life-changing for me right now luckily. So because of that and not having to mourn a previous way I lived life, I can see why some stuff about my MS hasn’t had a chance to hit me just yet.
Since I don’t have a crystal ball and it’s impossible to know how life will go, I’m pretty good at just getting on with things (I could be hit by a car tomorrow and MS wouldn’t even matter!). All I can do is listen to my medical team and do my own research etc. Strangely I’m much better at not stressing about big things which I feel like I can’t control Vs smaller stuff which I can (e.g. planning holidays), and perhaps you also have a similar mindset.
In short, don’t stress the not stressing! Either it will come along at some point and then you can definitely have a big moment, but you’ve found these forums/seems like you’re not in actual denial, so just go one day at a time, listen to your medical team and wishing you all the best!
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I think I felt the same way, was diagnosed a year ago. My family are quite a sarcastic lot, so more than overwhelming me with concern, I have a lot of jokes sent my way! Our family WhatsApp chats name changes with every time I say something muddled and they all join in limping when I struggle on slopes.
Having said that, I do get moments it hits me and I have a slight wobble and think poop this is a lifelong thing but do hold onto that fact I am on a top DMT so possibly things won’t worsen.
The MS nurses are fantastic and do check each appointment to see if you need them to step in if you struggle with the diagnosis.
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‘Maybe’ and ‘maybe’ would be my answer to your questions.
There isn’t any right way to do this, and you are dealing with it in exactly the best way for you and you will continue to do that. Don’t panic if you find things get messy emotionally - that can happen and it’s distressing and horrible but who can argue that it isn’t a perfectly healthy response to rotten news? Looking back 25 years, I prefer to draw a veil over those early months because they really were not pretty, but I can see that I was dealing with things in my own way and there was nothing wrong with that.) Having said that, do not hesitate to consult your medics and the people closest to you if you feel that you’re in real trouble with your mental health. There’s a difference between feeling wretched and like absolute shit for a very good reason and being properly unwell. Do seek medical advice if and when you think you need to.
I am sorry about your dx.
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Hi HolidayGal,
It is very hard to say whether you will react later. I do personally think that these things take a while to process and it might be that something ‘gets’ you later on.
i was diagnosed in September this year and was ok for a few weeks, a bit numb and not sure how I was feeling. This was a bit weird for me - I’m usually very aware of how I’m feeling!
I’m still not all that clear. I know I am worried about telling my kids in the next week or so. For various reasons we haven’t been able to do that yet, but it needs to be soon because the meds are gonna be in the fridge in the next few weeks!
I also have a lot going on mentally that I am processing anyway, so I’m not sure how the MS diagnosis fits into all that.
I do think though, that in time, things will become clearer, and I have a lot of support.
Maybe the same is true for you? Your feelings will unfold and become clearer with time.
I wish you well
Alison
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