This may seem a little dark but I wanted to share what I have learned from talking to people and I’m in kind of the same boat. People that made it through the pandemic with no help such as unemployment, disability ,food stamps ect… because they didn’t qualify for whatever reason have drained their savings and cashed out their retirement’s just to get by. It feels like they are just forgotten and are older but not old enough or have a medical condition and are not able to pick themselves back up like they were before age or illness. Everyone is so busy calling names about vaccinated or unvaccinated that they are forgetting these are real people and their situation my not be the same as others Ok here’s the dark part some people I have talked to would rather leave dying of covid on the table rather than dying from more stigmatized or selfish ways this pandemic has created a lot of hopelessness for many. I got diagnosed right before the pandemic and suffer with Chiari and trying to find a doctor that will give you the time of day before the pandemic was hard now it seems they dismiss me more than ever. sorry for the rambling but I needed to get it out. I hope everyone is doing well
Hey Heather,
Firstly, stop apologising. You have nothing to be apologising for. Secondly, I don’t think it’s rambling, these are genuine concerns. I believe those “stigmatized or selfish ways” have always been there, under the surface. But when we are under some perceived threat they come to the fore. Usually there are pockets of selfishness, but this pandemic isn’t just in pockets, it’s affecting the whole world. Everybody seems focused on keeping themselves safe. Is that ‘self preservation’ or ‘selfishness’? Personally I think that’s a very fine line between them and very much open to perception.
I’m in Australia. Back in early 2020 when COVID arrived in Oz there was a mad rush at supermarkets. The mad rush turned into fights in the aisles over (of all things) toilet paper. People screaming at each other ‘My need is greater than YOURS’. We’re talking about people with trolleys FULL of toilet paper, nobody needs that much toilet paper, Nobody. It really was just selfishness, but these people were guarding their stash/trolley like it was gold, like their life depended on it. In times like these I don’t think many people have much awareness of others, add a rare medical condition and often they have no clue of the realities.
I’ve got to say it’s not just Chiari that the medicos are dismissive with, covid has made that dismissive attitude much more prevalent. I’ve had 3 scheduled neurologist appointments cancelled and 2 non neuro medical specialists postponed, due to covid. We have no community spread in my state, but still most non-emergency appointments are being cancelled and that has got nothing to do with vaccination rates.
Merl from the Modsupport Team
This group is here to support one another and to vent Please don’t feel the need to apologize. Covid has made life miserable with cancelled appointments, surgeries and isolation from love ones. It’s important to know we are here to lead an ear and support.
Don’t give up, ots only get better, but the problem with chiari is best to have it done (operation) otherwise it will never get better , I had my operation since 2016, l can live a good quality of life.
Appointments that were due six months ago seem to have been forgotten totally waiting list are at an all time high and we are all victims of the system. Try to stay positive through this time and take one day at a time. My life was restricted before COVID due to my own abilities but now it has become a very lonely place. I am trying to focus on what I have and not on what I don’t.