Monday, June 25, 2012

dangling participles

First things first. Yes, I've been away from this blog for a while.  I've been taking the herbal formula and celebrating the little successes - the hemoglobin level that seems to be staying stable around 8, the occasional restful sleep and of course, the new job.  I think it's the job that has been most responsible for keeping me away.  It's only 30 hours a week, but it's a big change from what I have been doing while struggling to regain my health (or at least a semblance of health) over these past few years.

I alternately love and hate my job.  I love that I am a Librarian... in charge of two libraries... one a law library, the other a general library.  I love that I am effective and useful and that I am doing something toward keeping my family afloat financially.  I don't love the fact that these libraries are within the penal system and that I am expected to supervise inmates on my own.  And the paperwork.  I'm not too keen on the mountains of paperwork.  But overall, I'm happy with the job and I'll stay as long as they'll continue to pay me to do so.

What brings me back to Diagnosis Impossible?  More blood work.  I guess there'a a yay involved, because the hemoglovin hasn't completely crashed.  But there are other things which are far less "yay" in nature.  The level of iron in reserve has dropped to critical levels once again - down to 2 now, when it should be near 100.  So I'm not storing any of the iron long-term even though I'm taking in enough to keep my levels in the 8 range.  That's not good news, but it does explain why when I start feeling my body go into flare-mode I can offset most of the crash with a massive protein intake.

But the worst news is the upsurge of cancer markers in my blood.  It seems the wee beasties are alive and well and multiplying happily within my bowel and other smooth muscle tissues.  I can't say I'm surprised.  I knew they would eventually get around to making themselves known again.  I just hoped I'd have more time before they did.  No such luck.

Which brings me to this post.  A well-meaning co-worker discovered my illness today and reacted with sympathy... but not too much sympathy... which was both appropriate and appreciated.  However, she also said, in a very shocked tone: "But you look fine!"

How many times have I or my friends heard those words from some well-intentioned (or sometimes a not-well-intentioned) person?  Why is it that our society bases their perception of illness or disability upon the outward appearance of the individual?  I was met with disbelief, shock, even a little mistrust, simply from admitting that I do, in fact, have cancer. 

I am not emaciated.  I'm a fat, sassy and often cheerful individual.  This flies in the face of everything society says illness should be.

This same lady continued to comment along the lines of: "But you're so cheerful!"

To which I calmly replied, "It doesn't make sense to me to be upset over something beyond my control."

She asked about treatment options.  I gave the standard "I can't tolerate it" responses to radiation and chemo... which, I will admit, are the easy answers.  It is much harder to explain that I would rather let the disease have me than submit to something that will definitely cause me excruciating pain and prolonged illness - especially when my particular circumstances and complications will circumvent those treatment options anyway.  I did tell her that I take an herbal formula.  She started to ask if it was created by "one of those Far Eastern doctor people" but was fortunately interrupted by a call back to her work area. 

I know, from my prior interactions with this individual, that she means no harm and no disrespect with her comments and questions.  She is genuinely concerned and is trying to make sense of what she sees as a disruption in her world and in her perceptions.

Even so, it is never okay to respond to an admission of illness with "but you look fine!"  It may seem nice, I mean you are indicating that you cannot see any outward signs of such a serious illness, but it actually hurts.  So many people struggle with invisible illnesses.  It is time we shift the dialogue from how we look to an honest assessment of how we can help.


Rita said...
This comment has been removed by the author.
Rita said...

I couldn't agree more. I studied psych as one of my majors, and I do understand what it means to know someone or struggle personally with a disease/disorder that cannot be readily seen. Heck, I have depression. Just because a person looks one way, does not mean that they are that way. There are often so many other things going on below the surface. Maybe try to look at it this way: you are now a representative for diseases like yours. This will give you the chance to help educate and change people's perceptions of things. Be the change you want to see. *hug* Don't ever stop being you Anna, you're amazing.

Julie said...

Hi Anna,

this is Julie. can't begin to tell you how many times I have gotten the "but you look fine". Or when I go anywhere with my service dog I get asked "what's your problem?" a lot of the times rudely. And when I say pain management/anxiety, I get the "gosh I wish I could take my dog with me anywhere." As if those aren't good reasons to have a service dog, or I am just making something up so I can take my dog anywhere. Its hard when you have something invisible that you are dealing with, and when others find out, they don't always react with the most tact.

I don't have any good answers. But I am "here" with ya. I support you. Please let me know if there is anything that I can do, such as it is (online, lol). Thanks for writing this.

And I am thrilled to have found your blog.