Wednesday, 9 October 2019

Being Aware Means Taking Care

Today marks the start of Baby Loss Awareness Week. And tomorrow is World Mental Health Day
For many people, these two issues are inextricably linked. Every bereavement is painful, but the loss of a baby can bring all sorts of added griefs.
The term "raising awareness" is much used in recent days. Yes, I do agree that if we do not know about a problem, we will be ill-equipped to deal with it. But our 'awareness -raising' must not be done thoughtlessly.
Back in 1992,  Carla Joinson coined the term "compassion fatigue" for medical staff who were so burned out from caring for the sick, that they developed "the inability to nurture". The continuous strain under which they were working blunted their sensitivities, and ability to do their work effectively.
I am wondering now if there is some sort of "awareness fatigue" too. Richard, a good friend of my two daughters, wrote a blog post last week which moved me to tears. He has been a brave and passionate advocate for baby loss awareness, and groups like SANDS since the loss of his twins some years ago. But he raised concern about the plans to make the campaign last a month. Isn't that a little too long? Doesn't it make things harder for the bereaved families affected by this issue?
It is more than twenty years since the actor David Haig, and his wife Julia, lost their daughter Grace. David and Julia have been patrons of Sands for many years - and he speaks of the support of other parents, and the importance of the week.
Like Richard, I think David feels that for the other 51 weeks of the year, these parents want to live 'alongside' the tragedy, coping in whatever way is best for them. And sometimes they are tired and struggling, and all the 'public fuss' is just a bit much to bear, however well intentioned. I am not saying stop caring, or that it is wrong to raise awareness of important causes - but I think it is vital to be sensitive about how we do this. 
For twenty years, through the 1980s&90s, the BBC ran a Radio programme for people with disabilities, and their carers. It was brilliantly entitled "Does he take sugar?" - because so many people encounter a wheelchair user, and assume that if their legs don't work, they are also deaf and unable to make decisions about their tea, so they expect the carer to answer for them.
I hope that as I try to awareness of issues, with those who are ignorant of them, that I am also conscious of the feelings of people already affected. If this is a good day, does the person with mental health issues want to be reminded that last week they were really depressed? Every week is baby loss awareness week for some people, and if it is an effort to get out and go to work, do you really want well meaning people reminding you about it when you get to the office? Macmillan Tea Parties are brilliant- but I would not presume that someone affected by cancer "ought" to attend. I found this in a selection of prayers for World Mental Health Day, it is by Christopher Jenkins
May the Lord God bless you each step of Life’s way.
May you learn each day to open yourself to love and the blessings of love.
May you find a stick to lean on when the road is hard
- and not use the stick to beat yourself.
May you be blessed with life's abundance and blessed in poor days too,
-learning again what really matters, what lasts.
May you never give in to despair or the lie that nothing can change.
May you find ways of life and walk them with courage,
knowing that every step is within the heart of Christ
 - who holds all our days in love


  1. You write very sensitively about this and yes, I think there can be awareness fatigue. I hope that anyone affected by this is able to continue to cope this this and be comforted by the support.

  2. Very Well said.
    I find that fatigue has set in with many issues these days - relevant and worthy though they be. There is always some crisis - someone in need - a disease to beat - a political scandal to deal with - a new eco challenge....
    I know that they are all deserving of awareness - but some days I just have to tune it all out.
    A niece had a stillborn baby just over a year ago and she is slowly coming back to us. We speak with her gently and encourage her and her husband every step of the way - but sometimes they just need to retreat and be together and be quiet with their thoughts.
    I think that every now and again we all need, and deserve, a breather.

    1. Well said Margie. I cannot imagine how your niece and her husband must feel.


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