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.
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.