Response #
Current experience of grief
Respondent details
45-54 | Female | British
Q1: What was the nature of your relationship with the person who died?
No one died. I have ongoing grief (disenfranchised) over my unchosen childlessness. I also have MS and so suffer continual grief over the gradual, significant loss of my mobility and independence.
Q2: How has the person’s death affected you during the hours, days, and weeks that followed?
The grief over my childlessness was kept unspoken and unaddressed for many, many years. I spent at least 10 years thinking I could convince my partner to have children. We eventually split up in 2015 when I was 42.Throughout those years I felt shame, deep sadness, frustration and isolation. I am convinced the grief I felt when my partner told me he didn’t want children contributed to if not caused my MS. I still grieve for the life I always imagined I would have with children and to be surrounded by friends and family and what is portrayed through the media can be very painful.
The grief over the progression of my MS is ongoing daily. Over 16 years I have gone from it being almost unnoticeable, to using two walking sticks, to needing help getting up and going to bed, to needing an adapted car, to needing support at work (I worked full time as a teacher for 22 years), to having to give up work, sell my flat, have a colostomy and suprapubic catheter, carers 12 hours a day and I am unable to walk at all now and have limited use of my arms. I slowly get used to what I am able to do and then find I lose the ability to do something else that I was able to do a week before. Always knowing there is more loss still to come is scary and my mental health is poor.
Q3: How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement?
My partner and I would have very difficult conversations and tension over my childlessness. I would cry most weekends, without the distraction of work and every time a friend announced her pregnancy I would be a wreck. My family, friends and colleagues were unaware of my grief over my childlessness for many years until I wrote a blog [...]. It made relationships with my friends difficult for me while they were pregnant and having children and I still feel disconnected from them because of their family lives even though they are wonderful and try to include me as much as possible. I will always feel like an outsider and people are not sure how to relate to me.
My MS has also made it much harder for me to see my friends and family as much as I would like. I can no longer stay overnight so it is not possible to visit my family. My friends’ homes are not accessible. My grief and depression can mean I distance myself from friends and family.
Q4: Does the surrounding world seem any different to you while grieving? If so, how?
The grief can be isolating and I can feel disconnected from the world around me.
Q5: Has your experience of time changed in any way?
In relation to my MS time goes very slowly. I am tired of it all and wish I were much older and nearing the end of my life.
Q6: Has your body felt any different during grief?
The grief over my childlessness has given me a very poor relationship with my womb/ovaries/pelvic area. I don’t feel like a proper woman.
Q7: Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work?
I used to have to hide in the toilets and sob and sob whenever someone announced her pregnancy at work.
Q8: Is your experience of grief changing over time? If so, how?
The grief over my childlessness is lessening slowly, but I still have the menopause and my friends becoming grandparents to come. I have found support through Gateway Women, a community of women who are childless not by choice and that has helped. I wasn’t aware that I was grieving for many years and once I realised and recognised that fully in 2018 it did help.
The grief over my MS has worsened since 2018 when my mobility was severely reduced and I had to give up work and have full-time care. I am much more tearful and depressed. I have a psychotherapist who helps.
Q9: Have you ever found yourself looking for the person who died or expecting that person to appear?
I often imagine my children, the age they would now be had I had them and what we would be doing, even though they never existed.
Q10: Are there times, places, and occasions that have made you especially aware of the person’s absence?
There are constant times that make me think of my unconceived children. The world is very pronatalist and every type of media is a trigger. Right now, during lockdown it is homeschooling and so on that is talked about everywhere. Christmas is especially hard.
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?
I think really, what I said in my previous answer about imagining my children around me covers this.
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?
I feel my children are inside me but never got the chance to come out. I feel love for them even though they never existed.
Q13: Since the person died, is there anything that you have been doing in order to feel close to them?
Q14: Is there anything that you do in order to avoid being reminded of the person or of their death?
I am very careful about what I watch on TV, movies and books. I also limit my social media friends and usage to avoid constant reminders of other people’s family life. I also find other people’s MS difficult to cope with. I have friends with MS whose mobility has not declined like mine and I definitely limit my contact with them even though it helps me to be around others with MS at times.
Q15: Has anything in particular helped you to cope with grief? Has anything made you feel better or worse?
Gateway Women has definitely helped me cope with the grief of my childlessness. I attended a Reignite weekend organised by GW where we worked through our grief and talked about coming up with a plan B for our lives (although I find this more challenging because of the progression of my MS). I have talked about the triggers that make my grief worse over childlessness.
Working full time made me feel better about my MS but now that that has gone I rely on my psychotherapist.
Q16: How understanding have other people been? Have others said or done anything that you've found especially helpful or unhelpful?
Others are as understanding as possible. I also grieve that I will never meet a new partner and have a loving relationship due to the severity of my disability and the most unhelpful thing I hear is “you never know… “
Q17: How, if at all, has your experience of bereavement changed you as a person?
In some ways it has made me more resilient. The experience of disenfranchised grief is extremely challenging and isolating and I think it has made me a stronger person, but perhaps one that has not connected as fully with others as I could. I feel I have lost the person I was up until my mid 20s due to both my childlessness and my MS. There is the true person inside of me that never got the chance to live her life.
Q18: How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?
My father died in 2016 and the grief over his loss has been less intense and ongoing than the grief over my childlessness and progression of my MS.
Q19: Are there any aspects of grief that you find particularly puzzling or difficult to put into words?
How much of it is always there and I don’t realise it until I talk about it and then at times I will start talking and cry so hard that I have a nosebleed.
Q20: Are there any important aspects of your experience that we have not addressed?
I hope I have covered everything clearly. The attitude of society towards childless women can make by very difficult.