Saturday, 18 May 2013

You Look Sick

Though it is frustrating to have people say that you don't "look sick" with your invisible illness, imagine the opposite.  Frankly my ideal would be a "You look marvellous" comment made to me and my healthy body. 
My good friend, who I have never met in real life, has had news that her health is worsening.  I call her my RA twin because we are alike in age at diagnosis, RA affecting our hands and feet, and Sjogren's Syndrome.  We're also nearly the same age now.  She has had a lot of doctor's appointments lately and here is her reaction to reading her file.

"...I got copies of all the tests and reports that the clinic is sending to my primary care doctor.  Well, on the notes under General Appearance the hep noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of r/a can make you look sick. I'm sure I will mention this to him when I have my appointment in May.  I mean, there is another way of saying this, isn't there?"

So that's part of the downside of reading your medical records.  Comments that veer from being strictly medical are the sort of thing that you just don't forget.  I had a similar experience when I was first diagnosed. I opened my file and found myself described as a pleasant woman who was "somewhat obese."  I was shocked.  It was a "there's a pain that's going to linger" moment.
                                    Ed Grimley at
Some of our medications may eventually take their toll. My friend now has early cirrhosis and lung issues.  

Of course this may be a lack of preventative care through the course of the disease, but her pulmonologist and hepatologist are saying that methotrexate is the most likely reason these new problems have developed.  That won't stop me from taking my medications but I think now I will start being more suspicious of what I would usually dismiss as just the flu or a cold if it persists.
In my quest to educate myself I found a number of terms that have made me uncomfortable or angry.  One has to do with surgery for RA hands and feet.  It was often referred to as "salvage surgery" and I see the sense in that, but my first reaction to seeing the term was anger and discouragement.

Chronic disease is not for weaklings, and we know it.  We have to adapt and deal with things we never anticipated coming onto our radar at all.
I've got a long history of surrounding myself with toys and cheerful things.  That's why the next picture is a beautiful chicken.
                                         Polish Chicken

The language of medicine. An article from PMC

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