Ok - so I am going to put it out there. A question among those of us with advanced disease.
Why are our stories excluded from the general articles in the Beacon? Why do we receive an insert "the Inside Story" with our Beacon with stories of those with Advanced Disease?
How does this make me feel?
- excluded, a leper within a community of lepers, lonely, forgotten, dismissed.
Why is there such a separation within this community? My experiences mostly, particularly on this network apart from the occasional instance are that woman with and healed from early disease are mostly supportive of those of us with ABC. I can't understand why there has to be a separate issue. Yes we have different needs but perhaps including these within the regular copy of the Beacon will shine a light to those within the BC community of the unique challenges we face. Yes, it may cause some fear - is that so wrong? Why the walking on eggshells? If more people were aware of the issues that people with ABC face then there may be more advocacy support in the BC community for ABC.
I would love to be more of an advocate but to be brutally frank I have to make a choice as to how I best spend my time (which I am regularly informed is limited) - what would you choose, your young children or fighting for the rights of those with ABC? If my children were older I could do more. I do what I can but my job is to be well for my children - number one priority.
So, I am wondering what others think? Do you even realise that you don't see stories about ABC regularly in the Beacon?
I challenged the NBCF on the same issue with their fundraising pages so often focusing on EBC and not ABC which is the killer. A goal of no deaths by 2030 is not going to be achieved without a focus on ABC. This month the fundraising letter came with a story about a woman with ABC - at last! And you know what - she felt guilty that she got ABC, that she had let the supporters and survivors down. Is that the type of atmosphere we create by excluding ABC women and men from the Pink Paraphernalia?
Don't mean to be a cranky pants but I'm over the grey in Melbourne, I'm over having ABC and I'm over feeling isolated among the pink.
Rant over!
Love to all.
Amanda xx
