Why We Need To Reconsider How We Engage With Bereaved People

We – our society – needs to change how we deal with the bereaved.

Why is that? You may ask.

Because losing someone you love is difficult enough, living without someone you love is heartbreaking enough, living day by day is exhausting enough without the added frustrations and torments contributed by those who exclude and patronise those living with grief.

The  patronising comments and exclusion are usually unintended, I know. That knowledge does not make the sting any less, though.

In the 15 months since Hugo died I have been told I am a ‘conversation stopper’; been told ‘God will give me another baby’; seen the fleeting moment of terror in a stranger’s eyes when I have told them about my son.

I have been aware that people have trodden on eggshells around me. Sometimes those eggshells have been scattered because people haven’t known how to approach me (which I kind of understand, but life hasn’t exactly been easy for me either).

More often, those eggshells have mounted up because death, grief, bereavement is put in to the ‘too difficult’ pile.

You see, in our culture we are scared of death, of grief, of bereavement. That means that so many of us don’t know how to speak to those who have suffered a loss.

Before Hugo died, I was one of those people. Wanting to be kind, compassionate, empathetic but not wanting to say the wrong thing. I cringe when I think back to talking to bereaved people before losing Hugo; I can remember tripping over my words, saying I’m really sorry for their loss.

No one is perfect. We can all make faux pas, we can all blunder and put our foot in it. This isn’t about berating people for trying yet not quite getting it right.

This is about reconsidering how we engage with the bereaved – as individuals and as organisations.

It’s vital to say that many people – family, friends, and strangers alike – have been absolutely incredible in their support and making sure we know that Hugo will never be forgotten.

That said, many negative experiences compounded my heartbreak, and led me to be something of a hermit for several months because life in the sanctuary of my home was easier to control.

I have been upset and disappointed when Christmas cards omitted Hugo’s name, and his birthday forgotten by people who were unsure of what to do for the best (clue: ask).

I was frustrated to learn that bereaved parents are excluded from the Picker Neonatal Survey. Perhaps that is from a point of view of being sensitive – but it is patronising. As described in this post, a significant portion of views is therefore missing from the results, so how can services know what they do well, and what needs to be improved for bereaved parents?

I wrote a couple of weeks ago about how I was told because I had recent experience of birth trauma it is ‘almost impossible’ to have a balanced discussion (this also applies to loss).

As part of my #MatExp action for June I encourage everyone to #saytheirname as a way of helping people overcome their reluctance to talk to bereaved parents about their baby. The idea behind that is that parents can then talk as much or as little about their baby as they wish.

The point is to put the ball in the parents’ court. Put your own momentary discomfort to one side for a moment. Let the parent make the decision to talk or not talk about their baby for themselves.

Me and Hugo

Me and Hugo

Earlier today a national organisation I had applied for an unpaid role at told me I had not been shortlisted. There were two reasons: the first was a lack of experience at the required level of seniority – fair enough. The second reason made me feel very cross indeed: the panel felt there had not been enough time since Hugo’s death, and I was ‘not ready’. They prefer for parents to wait at least two years, as part of their duty of care.

A duty of care is important, of course. Of course it is, especially when dealing with sensitive issues as this was.

The trouble with such a policy is that it forgets people are individual. It forgets that grief ebbs and flows over time, meaning judging a bereaved person’s time since their loss is impossible.

To broadly generalise, grief does change over time. It doesn’t get ‘better’, it gets ‘different’. That means that as time goes on, there are more days that I feel better able to cope, having developed my own coping mechanisms. But it never goes away. Ever. There are days when I wake up feeling like all the progress I have made has gone. Times when I feel so, so tired from the weight of grief, and knowing that this is forever.

We need to remember that grief can be like floating along in an ocean. Sometimes it is placid, sometimes it is a tempest.  We need to remember life in general can be like that, too. We none of us know what tomorrow, next week, or next month will bring us.

We need to be able to ask open questions, listen to the responses, and take account of individuals’ situations.

We need to remember that there is no right or wrong way to grieve, no time limit on grief, and that everyone’s journey is personal.

My heart is irrevocably broken. But I get up. I am strong, I am a fighter. I campaign in Hugo’s memory.

I have used the pain of my experiences and put it towards positive, constructive use. I have not become bitter and angry – but with such frustrations, assumptions and being patronised in the way I can see how it could be possible to become bitter and angry.

People who are bereaved often get on with things. We have little alternative choice. Sometimes, we have need a bit of extra care and consideration (on a low day, or anniversary, say). But you know what? That makes us no different to any other human being.

We should treat everyone with kindness, empathy, compassion and respect. We should respect everyone’s individuality. We should understand that life happens. Death happens. That life is a part of death.

Perhaps if we did that there would be no need tread on eggshells, or reminding people to #saytheirname.

And by not having to constantly fight to feel heard, or worry about other people’s feelings bereaved people would have one less weight off their mind, one less thing to tire them out.

That is why we need to reconsider how we engage with bereaved people.

0 comment on Why We Need To Reconsider How We Engage With Bereaved People

  1. carolinetwigg
    July 14, 2015 at 8:53 pm (2 years ago)

    The second reason given for not being shortlisted is awful, and leads to so much frustration I know. My husband died 7 months ago and Ive been told by a counsellor I’ve never met in an organisation Ive never visited that I should ‘wait a year’ to talk to them – how can they make such a generalisation based on nothing, and decide what’s good for me mever having been in touch directly – it makes me mad 🙁

    Reply
    • Leigh Kendall
      July 15, 2015 at 7:15 am (2 years ago)

      I’m so sorry for your loss of your husband, Caroline. Such generalisations are based on nothing – and it’s patronising and insulting. You’ve gone somewhere for help, and to be turned away because of some kind of arbitrary rule? Unacceptable. They clearly know little about grief in the real world. Lots of love to you, and thank you for commenting xxx

      Reply
  2. Beth McElhiney
    July 14, 2015 at 6:46 pm (2 years ago)

    When I lost my baby I did a ritual, danced my pain and grief, was held in sacred space by my community and was able to fully release the pain. Blessed instead of the common American experience which tends to leave women and men without healing and then carrying forward their grief in their bodies as ailments like cancer. I talk about it with whom I need and when it needs to come forward again. Many women are judged by others about when they should “get over it” and I agree with you that it is different for everyone and for some you never do. For me I healed and moved forward into a full life without children and have transformed my baby’s energy into creating my art. That is not to say of course that I don’t have lifelong sadness around it but in the past 10 years acceptance has been forefront.
    I wish for you and your partner your own healing and balance. Blessings.

    Reply
  3. Mary @TheHeartyLife
    July 8, 2015 at 6:38 pm (2 years ago)

    Don’t get me started on the awkwardness of others…the difficulty FOR THEM!??!! Sheeesshhh it drives me nuts! Agree with everything you’ve said and pretty much in the same boat xx

    Reply
    • Leigh Kendall
      July 10, 2015 at 3:11 pm (2 years ago)

      Tell me about it, Mary. Much love xxx

      Reply
  4. Hannah Budding Smiles
    July 1, 2015 at 8:14 pm (2 years ago)

    I seriously can’t believe that they said that about the role you went for, as if at the 2 year mark a parent’s feelings suddenly change or they are less overwhelmed by the grief of losing a baby. Utter madness and I’m so sorry lovely because you above all other bereaved people I have ever met are the one who will make a difference and who will help people xxx

    Reply
    • Leigh Kendall
      July 3, 2015 at 7:49 am (2 years ago)

      Thank you lovely Hannah. It doesn’t make any sense to me, and runs the risk of disenfranchising people who genuinely want to make a positive contribution to others’ lives xxx

      Reply
  5. 23weeksocks
    July 1, 2015 at 4:14 pm (2 years ago)

    I have never understood why people are so unwilling to talk to bereaved parents about their child. I know it’s a difficult and emotive subject and something that everyone wishes didn’t happen but if you talk to anyone about losing someone that they love you have to remember that the conversation isn’t about you.
    I am in awe of your tireless campaigning and your absolute refusal to be silenced. You are strong and brave and a wonderful Mummy to Hugo who is looking down from the stars.
    I’d be really proud if you wanted to take part in my first ‘Remember My Baby’ linky which is going live at 0600 tomorrow. Hugo is a special little boy and you write about him so beautifully so I’d love to be able to share some of your memories of him.
    Much Love
    Louise

    Reply
    • Leigh Kendall
      July 3, 2015 at 7:48 am (2 years ago)

      Me neither, Louise – especially as if the child was alive few people would hesitate to talk about them with their parents. We need to talk about it, be open about it, break the taboo to show that bereaved people are just like anyone else – with different experiences and needs. Thanks for your lovely comment xxx

      Reply
  6. Goldie
    July 1, 2015 at 1:48 pm (2 years ago)

    Forgive me but what difference would waiting 2 years make? They think it will make you more “ready”. Are they suggesting that your emotions and sadness would be less? They need to spend time with bereaved people more!!! You don’t ever get over it or recover. You simply learn to live wirh the sadness and emotions and loss. X

    Reply
    • Leigh Kendall
      July 3, 2015 at 7:47 am (2 years ago)

      Very little difference, Goldie. It’s a rather daft policy. As you say, you learn to live with the sadness and emotions that come with loss, rather than being ‘better’ or ‘more ready’. I hope that by challenging this perception we can seek to make people think differently. Thanks for your kind comment xxx

      Reply

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