Forum

Grieving for loss of good health

Hi,

I’ve been asked to write an article for a friend in Australia who is setting up a website on grief and bereavement.

She wants me to write about the grief we can experience when we lose our good health. It’s supposed to be supportive for those people new to the situation.

I’m fairly upbeat about things and my worst time was pre-diagnosis when I didn’t know what was going on. I was diagnosed in about 5 months with PPMS and by that time I knew what I expected the neurologist to say.

If anyone has any pearls of wisdom or thoughts regarding what you would want to read if new to the situation then please let me know.

Many thanks,

Sarah x

hi sarah

when i was first diagnosed i felt relief because i thought i was losing my mind. (now 3 years later i know i lost it!)

thanks to all the people who rallied round i managed to stay positive.

when my positivity was flagging, i had a good hard look at myself and realised that i was lucky in that i could deal with the cr*p as well as the good. my younger sister asked me if i ever asked “why me?” but to my way of thinkin “why not me?”

if my sister had been the one to get ms, she would not have coped.

and there are young children who get it (real bum) so why not me indeed?

i had 50 years of rude health before the bombshell fell.

gratitude for what you have is the way forward.

carole x

ps will you be able to post it on here?

Hi

That has the potential to be a tricky one. The cliche first stage of grieving is denial, and when people are in denial you can’t really force them out of it (by denial I don’t mean denying that we have MS, but for me I was in denial in terms of not wanting to think about, avoiding hearing or reading about anything that might happen to me). I don’ t think denial is necessarily a bad thing though. At first I think we need it, as it protects us emotionally & psychologically from being crushed by what’s happened/happening, until we’re ready to begin to face up to it and to process what’s going on.

I think it’s worth having some kind of warning of the feelings that people might experience - things like anger or depression. But it needs to be said that it’s perfectly normal and understandable to feel things like that. I often notice people on the forum writing posts about how they’ve become really angry for example, and they’re worried by this as it’s so out of character, and they’re worried they’ll always feel like that. But like I say, it’s not surprising to be feeling strong emotions and, crucially, it is a phase they can move through. Finding ways to be able to safely process these emotions can be very helpful.

I suppose the thing I probably needed to hear was that having MS isn’t the end of my life. It can be easy to treat it as a death sentence - to see all the things that we have lost or might lose. But of the traditional stages of grief, ‘acceptance’ is the final one - where you’re able to start piecing your life together and move on. Getting MS is not the end of the journey, but rather a change in direction. My wife wrote a song that had the lyric ‘Everything’s going to be OK, but only when you’re definition of OK’s been redefined.’ , and that’s something I can relate to. Another quote I heard recently is ‘Pain is inevitable; sufferring is optional.’ I can’t remember where I heard it from, but what I like about it is that it says something about how we’ve always got a choice in how we choose to respond to what happens to us.

Hope you find it rewarding to write your piece. As Carole says, I hope you get to post it on here.

Dan

I thought that I had accepted my diagnosis quite well in 1996. I went to see a Physiotherapist for the first time in 2000 and as soon as she started to ask about my mobility problems I broke down and cried. This came as a shock to me because I didn’t expect it and once i started i couldn’t stop. I could see that she felt bad for making me cry but later I realized that she did me a favour. i’d never really grieved for what I’d lost, anyway when I did finally calm down I felt much better, more positive. Dan is so right in what he says ‘Pain is inevitable, suffering is optional’, very profound. Keep positive.

Lynne xx

Hi,

I eventually got round to writing my article. I ended up writing it by telling my story. I included some of the words I have read on here - hope people don’t mind!

If you want to have a read you can find it at:

http://www.griefandsympathy.com/copingwithchronicillness.html

Sarah x

hi

the mother theresa quote was also said to me! he (whoever he is!) trusts me to handle whatever i have to. i have managed (in varying degrees) so far.

ellie x