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The job of chronic illness

I mentioned a few days ago that when I had a few moments, I would blog about my life on hold. People who have never encountered long-term health issues have no understanding or appreciation of just how much work it takes to deal with “medical stuff.” I estimate this week alone I’ve spent seven hours on hold with medical supply companies, insurance, doctors’ offices and pharmacies. This is not unusual. In fact, it is a pretty average week. Some weeks it takes more time than this. It also does not include the time I was at a medical appointment on Tuesday. This is just time on hold on the phone!

If what you need can’t be bought at CVS or Walgreens, it can get complicated. Currently I have three pharmacies and two medical supply companies in my world. It often feels as though none of them have ever heard the term, customer service.

My oxygen supply company is the worst in this regard. If they weren’t bad enough, they don’t have hold music for that 40 plus minutes or more you’re on hold waiting for a human. Instead, they play a recording thanking me for calling and telling me how much they value my time! It just makes me increasingly angrier as I listen to it because clearly they do not value my time. It’s bad enough I’m on hold that long. Don’t rub my nose in it!

When you vent about this, often you get a lot of well-meaning comments suggesting you go to the media or lodge a complaint, but the trouble is the comments often come from people who do not understand how these services work.

Typically, (especially with medical equipment and supplies) you don’t get to choose the company, nor are you really the company’s customer (even if you are.) They get contracts from insurance companies or Medicare to be the provider for your area. Your personal opinion, choice or satisfaction is of little concern.

If a company doesn’t keep enough technicians on hand to reply to problems in a timely way, doesn’t staff customer service phones, and doesn’t stock the most current choices in care, it is pretty easy to have the lowest bid.

I am the real problem. To fight this system is a lot more involved than a well-placed call to someone in the media. It is a systemic problem and needs a systemic fix. (And by this, I’m talking about something way beyond the typical health care reform debate.) But, if you’re the one sick enough to be in need of these services, you often really don’t have the energy or time to take on that kind of fight.

I have so many battles on my plate, it is hard to fight them all.

So, this little blog post is really more of a vent and a way to voice the kinds of day-to-day issues people like me deal with just to have the medicine, equipment and care, we need to seem as normal as possible.


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