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.

I’ve put this on EL and PPMS to try and get lots of points of view

Many thanks,

Sarah x

Hi I have been dx- seemy profile & it I’ve you. Bit more. Not only am I struggling with a quick diagnosis, severity, medication choice, loss of income, employment changes, facility implications (large family), extended family perception of illness, financial implications. I had a shrink, kicked into touch after three sessions-a not on same wavelength. WORST Knowing there sommat wrong and not knowing what Quick diagnosis Not being able to walk properly Lack of understanding BEST 1 Getting dx so I knows what what wrong Quick diagnosis No medication-painkillers…etc Hope this helps Mike

Hi Sarah Im in limbo land, but in July 2008 I started to have problems with my hearing which had been normal up to that point. By August 2009 I was declared profoundly deaf at the age of 36 and my life changed completely! Its only by looking back that I can clearly see I went through the stages that people associate with grief, the denial, anger, a million other emotions and finally I suppose acceptance of a sort! At the time my huband contacted a local deafness resource centre who were great with all the practicalities, door bell, alarms etc. I was also assigned a social worker who I really liked, but she said something to me that has always stuck with me, she said “do not let deafness define you, you are so much more” I could see her point, but I was frustrated that it seemed such a massive hurdle to overcome and I was struggling big time!! Now, at this point I just want to say, this is just my opinion, and I accept I could be wrong, but now that a few years have passed Ive stopped fighting against deafness, I had to, I was getting nowhere and all the tears and anger were doing nothing to bring my hearing back, plus I was exhausted and I could see the effect it was having on my family. So now, rather than NOT letting it define me, I accept that in many ways it absolutely defines much of my life. It defines where I go, who I go with, when I go simply because I find being out of the house so difficult, but I now know I am SO much more than deafness. I totally get that the social worker was trying to help me with this comment, but I do feel it could only be made by someone that had never had something so massive affect every part of her life. Right, I’ll stop now, and I hope that somewhere in all of this theres something useful. Gogirl X

Hello Sarah,

Loss of independence

Difficulty in walking

Peoples reaction, family, friends.

Not understanding the everyday pain and effort.

Much longer to do simple things, like writing, dressing, showering.

Hope this helps

Janet

x

Hi Sarah

I’m undiagnosed as yet.

I think the worst thing is:

  • Not being able to do what you use to

  • Not knowing what’s caused your problems

  • worrying about family / job / money etc

  • Specialist’s that try to fob you off

-time taken to get to a diagnosis

Good things:

  • it’s excellent when you do get a doctor who is on your side and believes its not all in your head

  • when you are given the help and support you need to try and overcome your problems

  • you try to make the most of when you do feel well

  • try to do things to help yourself; diet/fitness etc

  • having an understand of what is wrong with your body

  • not letting it control you

Reemz

X

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

Beautiful piece of writing Sarah. Eloquent and elegant.

You are not clumsy in your writing :slight_smile: x