Pain vs suffering

pain vs sufferingThere has been much debate over the last few years in the dementia sector (professional and community) about whether or not it is respectful to use the terms suffering, sufferer or victim when referring to people actually living with a diagnosis of dementia. Of course, some people with dementia do feel as if they are suffering, and no-one should tell them that is not their experience, nor think badly of them for it. However, that is not the whole experience for many.

Interestingly, the quote added to the image of the road leading to my girlfriends Jacinta’s farm at Poochera is on the header of a Facebook group for carers, many of them past or current carers of a person with dementia, and they loudly proclaim their right to label us as sufferers. Obviously, they have not read, or don’t believe in the quote so proudly posted on their groups page.

We all do suffer some of the time, or, experience the pain and anguish of living with dementia, and as a past family supporter of loved ones with dementia, I have certainly felt my own suffering as I have watched their lived experience. One of these people, did not appear to believe or behave as if he was suffering in any way, even the last week of his life when he could no longer eat or drink, and could barely speak. His courage was extraordinary, but I can honestly say, my suffering watching him was profound, deeply moving and extremely intense. In fact, I go as far as saying, I have not fully recovered from watching him and others I cared for, deteriorate and then die.

The people who seem the most upset about the tidal wave of people with dementia who are speaking out about their right to ask people to stop publicly using the words sufferer and suffering (from dementia), are mostly family supporters/carers.

Asking not to be labelled as sufferers publicly, is not, and has never meant to undermine the experience of someone else, in the same way some of my friends with disabilities privately use words none of us would use publicly (any more) about them, but they would never label any person living with a disability like that in public, not even themselves, and would rightly expect others did not as well. We all respect their right to determine what is respectful language when referring to them publicly. For those of us trying to live well with dementia, is it simply the very same respect we are asking for.

A few years ago, many of the offensive words we don’t use any more in the disability sector, were still being used in the Dictionary. They are now listed as offensive in the online Google Dictionary, and I have this hope for the synonyms and other words many of us find offensive, still being used for the word dementia, or to refer to us. See these slides I used in a presentation in Perth in October last year, highlighting this.

Slide2

Slide1

16 thoughts on “Pain vs suffering

  1. Hi Kate.
    Thanks for sharing your blog.
    I think what you and other people have written here is very good and all these comments need to be said and I agree with them all.
    But for me it’s important to also show the other side of not living well with dementia.
    As Tommy has said he steers clear of the word “suffer” as it may scare some newly diagnosed people away and can make people think they are in for a lifetime of pain……
    Well that’s my life…
    I am in terrible pain every day cause of Lewy Body dementia and Parkinsons disease. So my days are filled with pain which the Dr’s can’t do anything about.
    It’s almost unheard of me having a pain free day.
    That takes its toll on me and anyone else who is in constant pain.
    Also as Lyndahenderson51 has said that PWD don’t come out for fear of being labeled as mad or for other reasons which is true.
    But I can tell you from experience and knowing others with dementia that some don’t come out cause they can’t relate to people they see out there living well with dementia.
    It’s not their world.
    I can’t go to my local shops without a plan and seeing how I’m feeling on the day. I can’t book an appointment cause I don’t know if I can keep it.
    Yes it’s important to let the community and family and friends know that people can still live well with dementia.
    But I can’t fit the “language of dementia” into my life most of the time.
    It doesn’t represent my life.
    So please don’t forget about us who do struggle.
    When you campaigners and mentors that are out there speaking for PWD please remember the other side to dementia and speak for us to.
    Thanks.

    • Hi Steve… thanks for sharing your tory here, and rest assured, when most of us speak out, we also include the dark or devastating side dementia has brought to our lives. Our challenge, is until very recently, that is the only side of the story to have been told, and causes so much fear, discrimination and stigma. Of course, if you feel you are suffering – from dementia, pain and a host of others health or life issues, then of course, that is 100% your experience; the point I try to make, is that to label everyone as suffers ion the public domain, actually is offensive to many of us, and also could be part of why the experience is so awful. Huge hugs to you both… I/we miss you being part of AADAC. xox

  2. Oh Kate I thought of you today..I overheard a conversation which disturbed me greatly. A man was telling a friend about his dad in a nursing home who has dementia, and has just been diagnosed with stomach cancer.
    When he asked the dr. about pain management for his dad he was told….he doesn’t know he has any pain because he has dementia!
    How can that be assumed!
    The man just accepted what the dr. said and seemed ok with it.
    I was horrified.

    • I am horrified… but NOT surprised. It is a crime against people with dementia that the care by doctors, nurses and carers is often still so POOR and INHUMANE!

  3. Those Google dictionary slides really do say it all. As you know Kate, I never saw my dad as a ‘sufferer’ during his years with dementia, although I know many carers who do use that word. Those of us who believe strongly in using more positive language just have to keep arguing the point. Keep up your fab work and sooooo looking forward to seeing you next month xx

  4. Pingback: Dementia Awareness Week 2015. A period of self-reflection will do no harm. | Dementia Vision

  5. If anything I, as the person who so loves Gregory, as the caregiver, as the person not diagnosed with dementia, suffer.

    But I suffer gladly if I can make Gregory’s life easier. I have always said that, “Gregory is not a victim of Alzheimer’s, he is a HERO!”

    Thanks Kate.

    • Thanks Lynda… and yes, being treated as sub human, and seen as mad is extremely unhelpful, and keeps many with dementia locked behind closed doors, self prescribed self protection.

  6. Kate, I wonder if carers struggle with this issue of language as they find it difficult to differentiate between their feelings and that of the person they care for ie they are suffering as you say you did as a carer so they label their loved one as a sufferer. You are so right when you say “asking not to be labelled as sufferers publicly, is not, and has never meant to undermine the experience of someone else”.
    I’m a service provider and one of the things we are constantly talking about is our use of language. Keep shouting about this issue… people are listening.

  7. I really try to get away from the word suffer because it spreads fear to those that have just been diagnosed, they think they are in for a life of pain as well as memory loss.
    There is nothing worse than to think you may develop an disease that is going to leave you in constant pain and that there is nothing that can be done about it.

    Tommy

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s