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Disclosing to Friends and Family

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Thursday March 06 2014 11:00 AM

In my earlier blog posts, I've mentioned that getting my MS diagnosis was somewhat of a relief, after so long of not knowing what was wrong with me. Obviously I wasn't pleased about it, it wasn't what I'd hoped for, but deep down I was kind of glad that I hadn't been spoofing all those years. 

Overall I am pretty matter-of-fact when it comes to bad news. Give me the facts, let me know what I have to do, and leave me to get on with it... I'll get there in my own time. I might not like it, but I'll do what I have to do. So it was with this directness that I started baldly telling people my news.

My family had been aware of all my GP trips, then the neurology appointments and stint in hospital, and I'd always been open about what I'd been told.  With hindsight, I now realise that it is important to consider how the person you're telling is going to feel about your news. Of course, I was the one who'd got this awful diagnosis, but as a family we were all going to have to live with it. 

My parents and sister took the news pretty well. Once they saw me and realised I was ok they visibly relaxed and rallied around. Occasionally though, I would see the worry I was putting them all through. 

Like the day I tripped over my too-high shoes - in broad daylight, on the main street of Buncrana. I rang my sister to tell her, she found it hilarious, and trotted off to blab to Mum; Who did not find it hilarious? Not even a little bit! By the time I'd got home an hour later, with my busted knee and, even worse, a damaged pride, my poor mother was convinced my legs had "gone". 

Then, there were the un-nerving few days when my dad learned how to Google, and would ring me up with more MS information he'd read on "that internet". Thankfully that phase was short-lived, and he returned to his (fairly) normal self.

But things like that show me that even though I am fine most days, they're always going to worry and look out for signs that my MS is getting worse. For me, that's one of the hardest side affects I have to live with.

My friends have been great. They've followed my lead, and we just get on with it. They asked questions about MS and listened to my answers. As time has gone on, they've got used to my symptoms, like when I am too tired to do something, and they just accept that's my life now. I know if I need their help, or want to have a whinge; they'll do whatever I need them to. I like to think I can do the same for them if they ever need it. 

The one person I didn't have to tell was my husband. And that's because he was with me the entire time. For all my appointments and meetings, and when I was in hospital on steroids, he sat beside me and learnt all about MS with me. When I started on daily injections, he would visibly go green looking at the needles, he still sat there and still sits there every day with me.

Before I sign off, I'd like to say that I know everyone's journey with MS is personal and private to them. Just because I'm pretty open about it, doesn't mean I expect everyone to be. I don't expect that at all. People shouldn't feel pressurised; or obliged, to tell the world about their illness. But I do believe talking about it helps. Even if it's just to one person, it can make the journey a little bit easier, and a little less lonely. I hope that sharing my experiences encourage more conversation about MS and that we all can travel along together. 

Thanks for reading.

Niamh

Author: Niamh McCarron

Comments

Linda

Thursday March 06 2014 13:16

I totally agree with you Niamh. Further to this. I find People can feel it hard to approach the subject making them feel awkward towards someone with the diagnosis. Openness on the whole subject makes everyone feel much more at ease with each other. Openness leads to education on the topic, less stigmatism's, personal contentment and overall acceptance by all parties.

Declan

Thursday March 06 2014 13:42

Well said, so much of it rings true.

Kate

Thursday March 06 2014 13:49

Absolutely great post Niamh, think I've got something in my eye!!

Polly

Saturday March 08 2014 03:18

What an enormous amount of courage you have Niamh so brave, you reduced me to tears with your story.

Karen O Shea

Monday March 17 2014 19:25

Well written article. The dreaded internet is the bain of my life in relation to MS. There are so many people mean well and delight in telling us about cures. I just nod and smile. How do you shatter their illusion by telling them that cure is about as effective as eating a box of smarties! As for falling, I always make it look very graceful. Not! I go down like a sack of spuds. The only thing is then I automatically start laughing like a hyena. I just find it so funny. Tears start streaming down my face. You get some weird looks let me tell you. Ah well. You have to have a sense of humour about it some things (;

Linda Corcoran

Tuesday March 18 2014 22:46

Wonderfully written Niamh. I strongly believe that talking helps no matter what life throws at you. I have always spoken about what's happening in my life and I really dont think I would have gotten through the past 9 months with having that chat or vent. You are a very brave lady xxx

Noelle

Friday March 21 2014 12:35

With you all the way, Niamh.

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