Response

Response #
212
Category
Past experience of grief
Respondent details
45-54 | Female | British
Q1: What was the nature of your relationship with the person who died?
I lost a baby to ectopic pregnancy. This was the last loss after a string of multiple losses - 2 previous ectopic pregnancies, miscarriages and failed infertility treatment.
Q2: How has the person’s death affected you during the hours, days, and weeks that followed?
When I lost this baby I also ended up with a lung infection meaning I was in hospital for an extended period (7 days). As I was on a maternity ward I could see other pregnant women and hear women giving birth on the labour ward on another floor.
It was so traumatic and I felt so ill that I couldn’t eat. Other patients would comment about me sitting at the table in the day room not being able to stomach any food and when they asked why was I there, told me I could ‘try for another baby’ not knowing my history.
Staff were kind and asked if they could call my mother which distressed me further as she had died suddenly 7 months before.
Friends didn’t contact me after I’d left hospital and I felt isolated, alone and wracked with grief.
Whilst I was off work recovering, I was called in by HR and interviewed by a new member of the team whom I’d never met, who ended up leaving the room suddenly in a distressed state. I realised this was because she was pregnant (I could see her pregnancy bump) and this added to my grief, distress and anxiety further.
When I returned to work I was given a job in a completely different building, doing tasks I had never done and away from all the people I had made friends with.
As a result of the trauma, lack of understanding from my employer and friends keeping their distance I started having panic attacks, suffered insomnia and having flashbacks of my scan and seeing the screen and being told it was an ectopic pregnancy.
I should add that I lost the baby just before Christmas too and Christmas has never been the same for me since - I’d always struggled with Christmas as it’s a time for children; losing this baby at that particular time, being really poorly unable to breathe etc just compounded it all.
Q3: How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement?
My friendships with my friends suffered because the majority of them stopped contacting me or avoided me if I seen them out in public. I ended up increasingly isolated through no fault of my own.
My in laws never contacted me. In fact, they seemed angry that I’d not been allowed to have the bouquet of flowers they’d bought me because of the lung infection I’d developed and as they had no understanding of what an ectopic pregnancy is, nor that emergency surgery is performed to save the mother's life, they thought I was over reacting and I was shunned by them.
My work colleagues could see I’d lost a lot of weight and was unusually subdued - only one of them asked me if I wanted to talk about anything. As I’d been moved to an all male environment and I hardly knew anyone I didn’t feel it was appropriate or that I was able to confide in anyone.
No ongoing support was offered by HR or management.
Q4: Does the surrounding world seem any different to you while grieving? If so, how?
The surrounding world just carries on as normal whilst your own world has changed irrevocably.
I couldn’t handle noisy, crowded environments - my senses went into overload, which caused panic attacks.
This lasted for around 2 years.
I had to do supermarket shopping very early in the morning (6am) or late at night (9pm) to avoid the crowds.
Q5: Has your experience of time changed in any way?
No
Q6: Has your body felt any different during grief?
Yes, I felt sick all the time. I had no energy. My hair and skin looked dreadful.
Q7: Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work?
Yes. I had no concentration so found it really difficult to learn the new role I’d been thrust into without warning.
I stopped reading - I’ve always been an avid reader.
I wasn’t able to concentrate for long on any task.
I had no motivation to do anything or go anywhere.
Q8: Is your experience of grief changing over time? If so, how?
I found an online support group to talk to about pregnancy loss.
I discovered other women online like me who had suffered multiple pregnancy losses and didn’t have children.
Having this shared awareness and understanding made me feel less isolated in my grief.
The grief I suffered (I now know) is known as disenfranchised grief. It’s not recognised by society.
Q9: Have you ever found yourself looking for the person who died or expecting that person to appear?
No
Q10: Are there times, places, and occasions that have made you especially aware of the person’s absence?
Yes... the due date of my child. The different life stages my child would have reached. All family occasions - Christmas, Easter, school holidays, christenings, prom, leaving school, graduation. The beginning of the school year. The rites of passage my friend's children have gone through. Engagements, weddings. Friends becoming grandparents.
All the normal everyday things that people with families take for granted. I think of my little one and what could have been. (I think of all of them).
Q11: People who are grieving often report experiencing the presence of the person who died. Have you had any experiences that you would describe in those terms?
No.
Q12: Do you still feel a sense of connection with the person? If so, could you say something about when you feel this and what the experience is like?
It’s really difficult to explain the connection I feel. I know my child’s birthday and how old they would be. I feel this child was a girl. They are a part of me as I am a part of them, even though they died we are intrinsically connected, this is never recognised by society or anyone I know so it’s been good to share here.
Q13: Since the person died, is there anything that you have been doing in order to feel close to them?
I speak about her from time to time with my husband. I light a candle for her and her siblings every year for the global Wave of Light event.
Q14: Is there anything that you do in order to avoid being reminded of the person or of their death?
I avoid baby showers. I avoid watching anything on TV about giving birth. Eg., the series ‘one born every minute’ or ‘call the midwife’ because there are too many triggers for me losing babies and I don’t want to see anyone else having an issue.

I avoid any situation that’s child centric because I am always asked if I have children and people react with shock when I say no and often ask intrusive questions or offer ‘advice’.
I adore children but it’s just been easier steering clear of these situations for my own personal well-being.
Q15: Has anything in particular helped you to cope with grief? Has anything made you feel better or worse?
Finding shared understanding from online support and realising it was disenfranchised grief I was suffering from. What made me feel worse with people avoiding me and ignoring me whilst I was grieving. I needed the support of my family and friends. I didn’t get it. This made me feel isolated and alone, which made me feel a lot worse.
Q16: How understanding have other people been? Have others said or done anything that you've found especially helpful or unhelpful?
I’ve not received much in the way of understanding.
A friend texting saying ‘I’m always here if you need to talk’ and me calling her as I was having a particularly bad day, for her to say she was just about to start work and ending the call and not contacting me again for weeks.
Another close friend avoided me then contacted me repeatedly to invite me to her New Year’s Eve party, I repeatedly told her I wasn’t up to it. At this point it had been just over 2 weeks since I’d lost the baby. I told her I wasn’t up to ‘celebrating’ and was taking antibiotics for the lung infection, so couldn’t drink alcohol as she’d suggested having a drink would ‘help me’.
A friend gave me a religious item and said they’d had prayers so that I could have a baby. No mention of the baby I’d just lost, nor the fact I couldn’t have children. No acknowledgement whatsoever.
My in-laws as I’ve already mentioned didn’t contact me and told family members I was over reacting.
The company I worked for moved me to a different job with different people and expected me to attend work and continue as normal (it was a physically demanding job and shift work) with no support or understanding of my grief whereas others who’d lost family members, had tangible grief, were supported with bereavement leave and taken off shifts so they could attend counselling sessions. Babyloss and infertility is not recognised in the same manner, it’s disenfranchised grief. It’s simply not seen because there’s no physical framework for others to recognise the many different aspects of grief.
Q17: How, if at all, has your experience of bereavement changed you as a person?
I’m more cynical nowadays. I’ve always been an empathic person and a good listener, yet my last bereavement taught me that people only see what they want to see and because they don’t acknowledge my remaining childless situation as grief, it means in their eyes, it doesn’t exist.
I’m more proactive at caring for myself. If someone is hosting an event that I know will trigger me, I explain I won’t go but make plans to see them 1-2-1 instead, so I’m not running the gauntlet of answering everyone else’s questions nor being left on the sidelines whilst everyone else talks about their kids/grandkids.
Grief has hardened me in many ways.
Q18: How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?
It’s disenfranchised - when I lost my mum people visited, sent flowers and cards, called, texted, offered support.
When I lost my last baby and was left infertile the silence was deafening.
I had only 2 cards from friends.
I witnessed friends crossing the road or turning on their heel to walk in another direction if I seen them outside.
I had 2 close friends stop contacting me completely with no explanation which left me really hurt and bewildered, especially as I’d been there for them during difficult times.
I was left alone to my own devices.
Nobody understood that I was not only grieving for what I had lost, I was also grieving for what could have been.
Q19: Are there any aspects of grief that you find particularly puzzling or difficult to put into words?
Having no outlet for my grief... no graveside, no service, no outward physical, tangible thing to explain. Being unable to qualify the grief of loss of shared life experiences with my peers and shared rites of passage with children growing up. Now realising that it’s known as disenfranchised grief.
Q20: Are there any important aspects of your experience that we have not addressed?
There’s been no mention of disenfranchised grief.