In the NY Times article, When Families Take Care of Their Own, Jane E. Brody takes a look at a segment of the population that has been overlooked when health care is being discussed. “Relatively little official attention has been paid to those who provide the overwhelming bulk of services for people, both young and old, who are unable to care for themselves.”
This story really hit home for me. I am one of those young sick people who is unable to take care of themselves. As a neurotically independent person, it’s been really hard for me to cope with the reality that I need help from other people to take care of myself. There are many simple everyday tasks that impossible for me with my disability.
When my fibromyalgia was at its worst, I needed help getting out of my clothes. Now, I would call it more manageable but the reality is that it’s only more manageable because I’m not working full-time or even part-time. That means I’m financially dependent on healthy people like my husband. And I’m physically dependent on people like my cute little sister who does all the cleaning around the house that would aggravate or exacerbate my chronic pain. People don’t really focus on the role these kinds of caregivers play in the lives of chronically ill people like myself.
I have spoken to other people with chronic illnesses and have been horrified by their battles to get financial support from the government (usually in the form of Social Security disability). The burden of paperwork hell is totally on the chronically ill person who is already incapable of taking care of his/herself. By and large, it seems largely that those of us who are chronically ill survive and more than that, even flourish despite our disabilities largely because of the support of health caregivers. G-d bless them!