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.