As with many events in life, disenfranchised grief can often be overlooked or put to the side because, simply put - it is extremely difficult.
Within the realm of terminal illness what does disenfranchised grief mean? Basically it is a type of grief not usually acknowledged or noticed and often does not meet the ‘societal expectations’ of what defines bereavement.
This can be very painful for the individual and loved ones because as they are heartbroken the unsaid is quickly slipped under the carpet. This may be witnessing the loss of cognitive function (dementia or other illnesses), a sense of responsibility/blame relating to lifestyle choices or physical deterioration.
There is also an element called ‘anticipatory grief’ where the process of mourning can be offset before any actual death has ocurred. This may be because communication is strained or no longer possible or perhaps an instinctive response to something inevitable.
I have some lived experience which I will share as an example: when my grandmother died and a few weeks later I attended the surgery who provided the palliative care and the nurse said ‘you should encourage your parents to change their lifestyle habits in order to avoid similar deaths’ I felt judged, criticized and sad because this line of thought did not correspond to the memories and image I held of my grandmother.
I feel it is an important subject and also an emotive one. Do you have experience of disenfranchised grief? or have navigated difficult conversations during the illness of a loved one?
I’m not sure if this counts as disenfranchised grief but i often feel a bit lost in my grieving process as i had didn’t have a great relationship with my brother. We were civil but had, had a lot of fallings out and we generally just found it hard to have a relationship. To the point that he had deleted me off his social media accounts. I saw him often at my parents house and I was there for him with my family through his final weeks and we all did become closer but have found the grieving process tough and confusing.
redkite,
Thank you for sharing your story with the marie curie community. Disenfranchised grief is an umbrella term for many bereavement experiences including family disagreements or conflict, in fact they are often intertwined. I’m sorry that your relationship with your brother was under strain and has left you feeling lost with your grieving process being tough and confusing. Losing someone can be heartbreaking and excruciating without any relationship issues - but here you have had a complex time with your brother. I’m curious to know how you feel in relation to becoming closer during the time leading to his death - is there a sense of relief or other thoughts/emotions? One aspect of disenfranchised grief is not feeling validated either in the social sense or by the self. However you are feeling is valid and valuable because it is your reality, your day to day, and your perception of the grieving process which you are going through. How you grief will differ from your parents - it is a unique journey you are on and you may experience various emotional states, as you point out - confusion and feeling lost. Given the situation you find yourself in there may be many feelings to navigate and digest but you have reached out here and sharing may be a source of relief allowing you to bring out some of the internal stuff which is going on for you. Hopefully other community members can become involved in this discussion and share their narrative and experience. redkite, you are so very welcome on the community but there is also a number if you seek a chat and that is 0800 090 2309.
Thank you Paulette. I do find myself able to remember how things were when they improved in the run up to his death clearer than the bad times which is positive. But then i do compare my grief with my siblings and my parents sometimes - as they were all able to maintain a good relationship through his life. It also does come up on things like anniversaries where siblings might want to do certain things to remember, commemorate or celebrate that i feel a bit uncomfortable about. As we didn’t have a great relationship i do feel like my grief is almost more trauma from seeing the EOL process, how that impacted people that were able to be close with him and how unfair it was that he lost his life before he could finish living it. I’m possibly a bit ashamed of that but if i think hard that’s how it feels. Maybe this is the wrong topic for this but its been cathartic to get it out as i’ve been thinking about it for a few years now.
redkite,
Thank you for sharing with the marie curie community and I’m glad that it feels cathartic regardless of the topic - you are so very welcome to approach whatever you are experiencing. Yes, getting it out there can lessen the weight of the discomfort you are feeling and also give a bit clarity to the situation - it seems that ‘closeness’ at EOL has served an important purpose perhaps… but the trauma is there too and you are addressing this in your own way simply by acknowledging its presence. Anniversaries can be a painful reminder and you mention the unfairness of your brother’s life cut short and feel a sense of injustice for him. Even with the relationship difficulties you are advocating for him, for his life and feel the unfairness of it. Tackling the ‘stigma’ often attached to grief, you highlight the feeling head on - ‘ashamed’ and maybe this can give it less power..? The raw, vivid grieving process can lessen in time and with this maybe create some space for your own pathway to work through/accept or find that place where it feels less painful. redkite, I am sending kind thoughts and appreciation that you have reached out here.
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