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A fledgling "diagnosee"

26 June 2015

Greetings readers! Firstly, please let me introduce myself. My name is Sarah and it is an honour and privilege to be a blogger on the MS Australia Uninterrupted website. Many moons ago, I was a biomedical researcher at the University of Oxford but, truth be told, some of that part of my brain atrophied far before any neurodegenerative disorder set in - and was more likely as a result of delivering babies than demyelination! I’m currently the proud mother of three beautiful (in my biased eyes anyway) small children, who rapidly alternate between charming and challenging, as only 3, 5 and 7 olds can. I am also very much enjoying dipping my toes back into part-time paid employment at the local university. In my precious moments of free time, I like to do pilates, yoga and work out, but for the most part my hobbies involve living vicariously through the assortment of extra-curricular activities of my offspring.

It was only a few months ago that I received my MS diagnosis, so I’m still processing both the condition and the convoluted route it took to obtain it. I’m very blessed to have an amazingly patient and understanding husband, who has been uber-supportive during this exceedingly bewildering period of uncertainty. Playing the role of companion (and on more than one occasion, co-conspirator), he has been pivotal in helping me navigate a series of truly bizarre medical misadventures, and in dealing with a myriad of characters and challenges along the way. 

As a fledgling “diagnosee” (the word patient doesn’t quite seem to fit), I am sure I will sound naïve to those of you who have much more practical experience with the condition. That’s because I am naïve! My hope is that you lovely readers can aid me in coming to terms with the undertaking that is Life After Diagnosis. As I embark upon this journey, I am faced with many questions and unresolved emotions following the last several months (see Figure 1, below “What I actually think”). My goal of this blog is therefore to share my experiences so far, warts and all, both to serve as a record of my own journey with MS, and to learn from others who have a wealth of knowledge of MS-world. I am also hopeful, that perhaps I can help some readers process their own diagnoses by providing a platform for sharing stories and facilitating open discussions.

MS Overview

Figure 1: Do you remember this Internet craze a few years ago? Can you relate to these images?

I should warn you that as a recovering biomedical researcher, I will likely talk science in some of my posts – I just can’t help it! This is also the point when I'd like to reiterate the fact I am not a doctor. My intention is to impart the most up-to-date, accurate, peer-reviewed information possible, and to the best of my ability. It is not intended as medical advice, but by all means, please use it as a discussion-starter with your doctor and other health professionals.

Enjoy the blog and please keep in touch -I look forward to hearing your comments!

Comments (25)

Great to 'meet' you Sarah. Looking forward to hearing the story of your pathway to diagnosis and particularly your views on current diagnostic practice in view of your bio-medical background. The pre-diagnosis limbo land is a scary place to be, isn't it? A diagnosis (even one as life changing as MS), can actually bring relief, because then you can put a name to this 'thing' and the road ahead seems clearer, there's a whole community doing the same thing, and you have some well trodden paths you can choose to take, instead of just a bewildering wilderness (bewilderness?) ahead of you!

Yes, limbo-land was no fun and "bewilderness" is the perfect term. I found myself constantly jumping at shadows and struggled to judge when to report re-emergence of old symptoms and when attribute them down to pseudo-exacerbations. In that sense, life post-diagnosis is oh-so-more straightforward! Thanks for your thoughts Lawrie!

Thanks Rebecca! I think it will be a while until I switch gears to the scientific realm because I have so much else I want to share beforehand. Let me know if there's something in particular you want me to research though - I'll do my best!

Good on you for being so open about a recent diagnosis, Sarah. Looking forward to hearing more about your journey so far, and I really like the "diagnosee"thing, rather than "patient" or "sufferer"!

I have to say I'm feeling a bit nervous and wondering what the chances are I'll be outed at work. I guess I'm OK if that happens though. If this happens, I'll let you know how it goes....

I am 36 weeks 2 days with my infant woman and have entered pre term labor and tightenings since 25 weeks expectant I await her to be below yet would certainly ENJOY making it to at least 37 weeks. Also visit my blog: <a href="">fake ralph lauren</a>

Limbo and three children is something I can very much relate too. The moment you want the world to stop though life has to continue because you have a little family that needs you present. Look forward to reading more. :)

Yes. Being present isn't exactly optional an term of the parenting contract is it? And much as I love my little ones, they can be quite draining and I have to remind myself to keep pressing on.

Wow Sarah, you were only diagnosed a few months ago? A round of applause for jumping straight in to sharing your experiences through the blog. I think it was about 6 months before I could say the two little letters 'MS' without crying. Looking forward to reading more from you!

Thanks Samuel! I think my diagnosis was almost anticlimactic and occurred while I was in remission, so I was just so grateful to not be 'undiagnosable' any more.

Aw Sarah loads of love and hugs to you. I was just thinking the other day of you guys and thinking you had been quiet lately. I hope you are ok emotionally. It can be a huge thing to deal with. Catch up soon. Jac xxx

Thanks for your kind words Jac. Most of the dramas on the medical front took place last year, so in recent times, things are a lot more settled (knocking furiously on wood though!). We're so missing everyone back in NZ and do hope things are going well for you and your not-so-little boys - my haven't they grown! Lots of love from us all, Sarah x

Hi Sarah. University does seem like many moons ago! I try not to think about the exact numbers when people ask. You are admirable for sharing with new friends and old. Hopefully see you back in NZ some time, but will definitely keep in touch. All the best to Chris and family. Ben

Thanks Ben! Yes, I look around at students on campus and they look so young and innocent. I feel twice their age. Oh wait... I actually am twice their age!

Hi Sarah, I'm really sorry to hear things have been so tough lately. You are a super brave person and we will be thinking of and praying for you and yr family over the coming months. Lots of love xxx Anita.

Hi my wonderful friend! I always love reading what you write, as your warmth, wit, and knowledge always come through and i feel like i can hear your voice (although it's been a few years). Reading this today was hard- i have very little understanding of ms, but i know it is tough. Lots of love, strength, joy and prayers coming your way from me and the family xx. Arohanui, Janine

Thank you Janine! And yes, it has been far too long. Our littlest ones haven't yet been introduced - we need to rectify that. Please do consider a holiday on the Sunshine Coast :-), or else we will simply have to come to you! Thanks again for your lovely words of support - they mean so much to us.

Sarah! If you can master Bioengineering, you'll master this. OK, maybe it's not the same, but you're awesome and I don't care what the diagnosis is, you'll beat it.

Thanks for the encouraging words, Curtis! Not sure about beating it - but I'm enjoying the current 'ceasefire' state I'm in. Hope all is well with you and your beautiful family.

Well, good morning! It sounds like you are where I was a couple of years ago - when I was first diagnosed. I'd say that you're going to write some interesting entries, with all of that juicy science flavour and all. I'm looking forward to more!