Wow, what a week this has been. It’s always funny to me how life never fails to let you get comfortable and then pull the rug from underneath you. Just when I thought I had reached a good place and gotten my disease under control (to my best ability) I find myself in an ambulance being rushed to the hospital. It was a rough situation and one that looks like it will be putting me through quite a roller coaster for the next few months.
I ask myself this question far too frequently. Maybe it’s because when I first started having symptoms 10-15 years ago I was usually told it was all in my head. That was not all I was told… I would have people tell me I was acting sick to get attention too! Because.. That’s logical… Apparently people think that sick folk just want to lie around in bed all day. Does that really sound appealing to anyone? After about 24 hour you start getting antsy and need to get out of the house before you feel like you might actually go stir crazy! Trust me on this. But it wasn’t just the general population. It is also the doctors. Why do you think we need to have second or third opinions just to get a proper diagnosis? Doctors just don’t believe it if they cannot see it. Unfortunately often times when I get a new symptom (even with the doctors knowledge of my genetic diseases) they doubt it. If it doesn’t sound like a big deal to them they shrug it off or attribute it to medications or stress and the like. More often than not these symptoms become much more than anyone originally thought. I don’t think anyone really understands how insanely frustrating this is. To be second guessed at every appointment. Especially if you’re a woman, seeing a male doctor ( look for future blog post on this subject!). Females are often highly regarded as emotionally unstable, illogical, overly dramatic, no pain tolerance, etc. This constant treatment of doubt and questionability not only makes a spoonies life more exhausting and stressful than it already is but it can also hurt our chances of a timely diagnosis.
For many of us, our chronic illness has redirected our lives. Things that we dreamt of doing no longer seem possible. Day to day activities take more out of us. We refer to ourselves as “spoonies”. For those that have not seen this term before or wonder why we alway post this term, it is based on what we know as the spoon theory.