I’m writing today for my own curiousity to try and help my little sister. She is 14 years old and a week ago was diagnosed with MS. We have been around the country over the last four years (so hospitals are not a new thing) and suffered what in hindsight was her first, possibly second episode of MS back in 2010. The original diagnosis was Acute disseminated encephalomyelitis, and although obviously having our suspicions it wasn’t until a week ago they were confirmed.
Although sufferring from massive headaches (she describes them as brain squeezes), weakness in legs (inablility walking), total loss of bladder control, body tremors in her previous episode before diagnosis four years on she was left with only the bladder problem which she has nearly learnt to fully control.
Just before december she started to feel flu-like symptoms and was diagnosed with Labrinthitis, it wasn’t until 2 weeks later when her vision started to deteriorate that she was admitted into hospital for some tests. Within the last 7/8 days she has received a course of Predisolone and Immunoglobulin. Her legs are regaining strength now but eyes seem to be worsening, although the consultant has warned it could be weeks or longer for them to recover if they are going to at all?!
Parents have been obviously been quite protective of her, where as i have been ordering festival and gig tickets for me and her to attend. What my mum and me i suppose to some degree are worried about is her almost lack of acknowledgement of the situation. She has looked at some websites regarding treatment, side effects and so on as well as reading through the MS Booklet she was given but doesn’t really seem phased by it all.
Obviously her family is around her in hospital and we’re being strong for her, but she has been on the phone with people who have been in tears, so much so that they’re unable to talk. She is highly intelligent and i understand she has been going through this a fair while now but seems to be showing no emotion towards the situation whatsoever. Her eyesight is gradually worsening which must be really frightening (at least i would be scared in her position). We have tried to talk to her about how she feels but she seems unable to articulate any emotion about the scenario. I’m aware that everybody has different coping mechanisms in these situations but as a concerned family member was just wondering other peoples opinions on this.
How did anybody else feel when they were diagnosed? Was it a prolonged period of bafflement followed by a dawning realisation, a immediate response or just a get on with it approach? ANY advice on how to approach the subject would be more than helpful! I apologise for the waffle but i thought it nessecary to be able to put yourself into her mindset if you’re fortunate enough to not be in that position already.
Hi. I am not diagnosed so cant imagine what your sister and yourselves are going through. There are lots of great people on this site who i am sure will give you lots of advice. Take care, ailsa
She must be very grateful for having such a lovely supportive family around her
I’m the wrong person to ask really as MS was a shock to me, I was busy just trying to carry on as normal and had no idea what to expect! But it was ultimately still a relief to know why everything was getting so difficult for me. I guess your sister will probably be glad to finally have an answer and a way forward after such a long time chasing an answer.
I hope you and your sister both find the support you need here. It sounds like she’s quite accepting of it but let’s face it, you don’t get a choice with MS. But there are parts of it that are pretty daunting and that’s probably a bridge to cross when you get to it - and you thought you could waffle!
Hi simon, It must be such a frustrating and scary time for you all, but strangely probably not so much so for your sister. If you think about it, she was ten when all this kicked off and kids are usually matter if fact about stuff. They don’t over analyse what they once were able to do and now can’t. I am not saying this will always be the case, but, I think because she was probably so involved in other things mentally at the time of the onset, and being so young, the full extent did not register. Part of me thinks that as far as acceptance is concerned, she is probably lucky to have had to accept it at such a young age. However, lucky stops there, which I am sure you are all much aware of. Keep normality going, that’s a fantastic attitude. Let her enjoy gig and festivals, why not? At this point the grieving process is probably more with you and your family. Your sis Is coping, living as normally as she knows how, and you will all have to be there, as you have been anyway, when and if she needs you all. She has a great support network, but equally, you all need to be supporting each other. Keep up the gigs and the festivals and the normal,life for a 14 going on 19 year old. My hat goes off to you S x
Thanks to you all for the positive comments, there all extremely helpful and encouraging.
In response to what ‘nindancer’ mentioned, it hadn’t occured to me that closure on the diagnosis might have been useful for her. Didn’t look at it in that perspective.
I agree fully with the comment of younger people not being so analytical about things also, but then as noted, the ‘what choice do i have’ attitude might have something to do with her lack of response also. My mum is a worrier and in this case maybe rightly so. She is afraid that my sister might bottle everything up until it all becomes to much instead of confronting things in more managable chunks so to speak.
The griefing i think is for the life that everbody had imagined for her and worries of her quality of life later on. When we read through the book there was a segment that mentioned about life expectancy and how a lot of the time people with MS have a normal span maybe minus 7 years. I explained that it means nothing as nobody knows when they’re going to die anyway.
I suppose it’ s all relative and i’m trying to judge her actions upon my own and what i would be like in her situation. I realise now that although it’s obviously upsetting i am just thankful that she is alive and able to be part of our lifes.
I found it does take a while to sink in, Sydeepsouth. It’s only been a week since her diagnosis. Also, I can relate to the part where the sufferer themselves is less phased by the diagnosis than the people around them. It’s brilliant that you’re being so positive, thinking of taking her to gigs and so on.
My symptoms are not as severe as your sisters (I had tingling and numbness all over my body for weeks, and now have permanently numb finger-tips and toes) but I remember when I was first diagnosed last May some of my friends and relatives were upset by the diagnosis and I found myself telling them, look it’s still the same me, I am the same person, same body… just the prognosis has changed.
I always feel sad when I read of MS happening to young people though and I wish you and your family all the best. It must have been a shock to you all.
Most people seem to have a pretty fixed view about how other people ‘should’ react to things. For all that we pay lip service to the fact that (as you say) people have different coping mechanisms, we do not really believe it! And so, when someone reacts in a way that we do not think is ‘right’, we worry that they are not doing it properly.
There is a common and (in my view) wrong-headed view that says that bottling it up is always bad and letting it fly and climbing the curtains is always good. I do not think that this is true.
Many of us have spent quite a while (months, years even) knowing on an intellectual level that we had MS, but declining to take that on board at a deeper emotional level. ‘In denial’, in other words. But being in denial is not always (or even usually) a bad thing, a failure to cope. It can often be our natural self-protection coming to our aid and protecting us from more than we can handle right now. It is, in other words, exactly what we need.
My suggestion to you and your family would be to take your lead from your sister. If she doesn’t want to talk, don’t try to make her. If she feels loved and supported and knows that there is a listening ear and help at hand whenever she wants to explore further, I think you will all have done what you can. One of the good things about being so young is that she can be involved in the day to day decisions about treatment and so on just as much or as little as she wants to be. She will find out more about what is the matter with her when she is good and ready. At an unconscious level, she probably knows what she needs: just take your cues from her and try not to force the pace.
Reading your post again, I was struck by this bit. Something that people who have just been dx with MS tend to find is that one of the hardest things is managing other people’s reactions to the news. Having to deal (as she has had to) with people snivelling down the phone at her, incoherent with distress, when she is trying to hold it together is a good example of the problem!
and I wish you and your family all the best. It must have been a shock to you all.