Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay:
I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the same breast. She originally had a lumpectomy and radiation, and it seemed to be over. With a mastectomy looming in the near future, and reconstructive plastic surgery, she said she could handle it, when I asked her. She was okay.
Welcome to the new normal.
Handle it? As though this is normal? This is a major stressor. Yet over and over, I hear cancer survivors dealing with recurrences – or even with their original diagnoses – and proudly managing the stress. In fact, the only people who seem to acknowedge the stress are the surviving spouses.
We are not made to manage the myriad stressors that modern life brings. We have evolved simply: fight or flight. Not “I can manage to work during chemo.” There is something terribly wrong here.
We now assume that it is normal to work full-time while raising children, and to take on more and more responsibilities with no respite. I mentioned this to an early-30’s acquaintance – that it isn’t normal to have to cope with 50 and 60 hour work weeks at top pace, with two or three young children in daycare and a lot of commuting, all at once. She was surprised – it had literally never occurred to her that this wasn’t a normal state of affairs. Most women in her age group do this, some better than others.
So add cancer – or any major illness – into the mix. Why do we think that we can and must manage this as well? That it speaks badly of us to be terrified and panicked… and tired. Truly tired. That this is a normal way of life.
I am concerned that we, as a nation, as people, don’t get it. We don’t realize that this is aberrant in situation, in level, as a way of life. In the USA we have no safety net for this kind of life-altering experience. We often have no way – even with sufficient money – to take time off… because we can lose our health insurance. We have no choice but to ignore the obvious stress and exhaustion and keep on keeping on. This is not healthy. And yet… I know so many women (and men) who think stress is normal, acceptable. We aren’t made for it, but we have few choices.
So yes, my friend is handling her breast cancer surgery well. But deep inside I think this is symptomatic of our crazy belief as to what is normal.
Deborah, thanks so much for this contribution. When I first read it I had to check myself — I’m often in that group that says, “I can handle this,” when I really should be saying, “Stop the carousel, I’m getting off!” What are your observations about other countries? Where do people handle stressful situations differently?
Susannah –
I wish I knew the answer to your excellent question.
I think the stress is exacerbated here in the US because of the concern about ongoing health coverage and retirement money. I have noticed that women in the UK, for example, could choose to not work when they had cancer. It seems to make for a calmer life (or as much as it can be, with a cancer diagnosis).
Most of the people I’m aware of are English-speaking and are in the UK, Canada, Australia, etc. All – ALL – of those countries have a safety net that the USA lacks totally, with health care a given. It might be triaged, it might not be as fast as you want, etc. – but it’s there.
So – I will once again put in a plug for our desperate need for universal health coverage.
For the extremely ill… we have SS disability and Medicare/Medicaid. I have seen women trying to navigate the system and apply for this while in treatment… So we have a tiny safety net for the severely ill, but not enough to allow most people to stop working.
I am a cancer survivor. Can I be insured? I have no idea. I have not applied, and so not been refused. I have group coverage through my employer, but unless I work until I am 63 1/2 (and take 18 months of COBRA) I will not be sure of coverage again until I can go on Medicare at 65.
Stop the carousel – I WANT TO GET OFF!
I’m should add that I, too, have MUCH too often said yes when I should have said – NO WAY, I don’t have time. I’m trying to stop that 🙂
A thoughtful opinion and ideas I will use on my blog. You’ve obviously spent a lot of time on this. Congratulations!