For both of them decisions about health care and future possibilities are almost overwhelming. In Suleika's case, though struck with a life-threatening illness, she is still covered by her parent's health insurance because of the Affordable Care Act. However the number of bills and complexities of insurance coverage are so difficult to handle that her mom has had to quit her full time job so she can handle the financial and insurance details, while Suleika concentrates on getting better, at least for the next two years.
For Chronic Rants the situation sounds even more confusing with numerous choices and possibilities and no easy route to solid information and the best decision. Having to spend that amount of time and energy just to maintain the basics of treatment leaves you unable to get better.
Their situation reminds me of my search for a diagnosis early in my disease. The symptoms were overwhelming, and at the same time I had kids, a job and family. Trying to juggle all of the responsibilities kept me from making the best health choices.
This is a problem that we all wish that we could help to solve and highlights an issue all too common with chronic disease.
This problem is known as "decision fatigue". There are studies about it that show that the more problems we have to worry about and make decisions about in a day, the harder it is to make good decisions or any decision at all.
I have taken some information about this from a political article in Bloomberg by Ezra Klein where he quotes from a book called “Poor Economics,” by Abhijit Banerjee and Esther Duflo.
So while you are struggling with all of the issues of chronic disease give yourself some sympathy for the burden of all of the work you have to do just to stay afloat. When you realize that some of the best coping mechanisms with chronic illness are money and a good education it gets pretty discouraging, and that may account for the scorn some well-off politicians use when they blame poor people for making bad choices.
Dealing with all of these decisions is like making sense out of a complex puzzle over and over every day. It takes a lot of energy just to do the basics, and it's vital to our well-being.
When it comes to finding a way to get help with health decisions getting expert advice is vital. How to find the experts is yet another problem.
In theory a set routine ought to be helpful if only in lessening the sheer number of choices you make every day.
If there were an easy solution to this we would all be better off. Please leave ideas in the comment section.
Your post reminds me of one I read recently by Julianna at http://chronicallyawesome.org/?p=1, where she says, "I have removed most of the complexity from my life by simply making no decisions. But, this is not (before you make what is the first logical jump) due to laziness. This is due to the biggest anxiety that lives deep inside of me, the greatest fear that drives my every waking moment, and every nightmare that I am told keeps me screaming throughout the dark hours of my otherwise quiet home. My fear? Making any decision that might make anyone unhappy." Julianna describes perfectly the crippling effect that decision making can have, especially when living with anxiety.
ReplyDeleteFor me, by necessity my life is really slowed down. I don't go out very often. I work as much as I can, play a bit, do some blogging, and rest a lot. This slower pace of life lends itself to making fewer critical decisions per day.
Not everyone has this luxury though. Certainly when the girls were younger, I would have to make decisions (although with a spouse who is equally accommodating as I am, we spend a lot of time saying, 'What would you like to do?' LOL) more frequently. As time and fatigue wore on, honestly I would just hope for the best!
As you say, learning to be kinder to ourselves by giving ourselves credit, is probably one of the best things we can do for ourselves, as doubting our worth and abilities also erodes our decision making ability and quality. It's one of those vicious circles!
Blessings,
Jane
I am glad to see your comment Jane. It's very odd the way bloggers sometimes end up on a related track. I need to read Julianna's post
ReplyDeleteMy life has been more similar to yours based on the pace you describe because of working one handed. In fact, because I have an ereader loaded up with Harry Potter that's what I've been reading despite the piles of neglected books. It is so easy on the hands and I grew up on fantasy. I feel like I'm on vacation except for the blogging.The next one is a list type and related to coping.
Here's a link to another article that might interest you, except you probably did not miss it http://www.nytimes.com/2011/06/23/health/23lives.html?smid=tw-share&_r=0
I love Harry Potter! :) I'm having trouble with the conventional reading now, plus books aren't as well made as they used to be. For example, the current book I'm reading has the text printed far into the gutters, and I have to force the book open wide to see it.
ReplyDeleteI saw you talk recently about hand surgery. Have you blogged about this? What did you get done, and how is it healing?
I am playing with the idea of getting a tablet - not only for reading, but for making my art... of course, I need to figure out the financial part first.
Thanks for the link - I haven't read that one before!
I am just home from having the cast off 3 weeks after a wrist fusion. So glad that I can straighten my elbow, though it will take some rehab to get all the range back.
ReplyDeleteMaybe I will blog about it - I have lots of pictures but don't want to gross anyone out. However it's good to see what is considered OK or normal. I found a wrist fusion blogger when I googled and was happy to read about it. She might have bruised less as she is only 24.
I had one bit of luck - there was a Harry Potter I missed - The Goblet of Fire.
Annette
I only just saw this (and I've finally figured out how to subscribe to comments on individual posts LOL).
DeleteWrist fusion: wow, that sounds huge. I'm sure you could include some information and a few of the less graphic pics. As you say, it helps others going through it to see what it's about and the projected benefits and outcomes. I hope you continue to recover well!
Woot! How nice to discover there was a book you missed. :)
I'm so glad you are subscribed. I do plan to blog the wrist fusion, even though with better treatment now it will be less common. I found a fusion blog before the operation and it was good preparation for mine.
ReplyDeleteIt was terrific to find I had missed a Harry Potter - and using an eReader is great when you are one handed. The book I am reading now is Trick of the Dark by Val McDermid and the format is good. It's shorter and wider so it stays open better. The imprint is Harper Weekend. I'm almost afraid to read it if half asleep because the critics call it smart, witty and devious and brutally clever.