Sunday, June 26, 2016

OT post: The Stigma of Illness

Stigma is a mark of disgrace that sets a person apart. When a person is labelled by their illness they are seen as part of a stereotyped group. Negative attitudes create prejudice which leads to negative actions and discrimination. (LINK

I'm jumping way off topic here to share an experience I have had recently, one that really opened my eyes to the way we view people different than us.
A little background on me beforehand though:
I'm a southern girl, born and bred, raised to share a smile and a conversation with a stranger on the street, hold the door for someone behind me, and to see everyone as equal. Gay, straight, transgender, Muslim, Jewish, Pagan, black, white, brown hair or purple hair, 6 or 66, man or woman, I try my best to show love and respect to all. Usually when I see someone who is vastly different than I and on the outside of the conservatively WASC (white Anglo Saxon Catholic) background I was raised in, I'm a little more enthusiastic about showing my love and acceptance for them. And if I see someone who is "obviously sick", I go out of my way to hold the door for them, share a smile, something small I can do to make their day just a little brighter.

In the past few months, I have been diagnosed with GERD or acid reflux based on symptoms I have had forever. Endoscopy was completely normal, as was the biopsy, so my GI doctor referred me to a larger hospital for what is called an "ambulatory pH probe" which is a probe that would be sent up my nose, down my throat, and into my stomach for about 18 hours that would record the pH of my stomach and esophagus as I went about my daily life.

Friday was the day and I did a little research, finding out that a wire would be connected to this probe and would connect to the recording device that was outside of my body. I was frankly terrified about transportation. My original plan was to take public transportation to and from the hospital, but now, oh my gosh, people will stare at me, maybe I should just pay the parking and take my car. And I sure as heck am not going outside when I get home! Financial necessity won out over embarrassment and I took public transportation.

I got to MGH without a problem. Public transportation was par for the course, I was jostled and squeezed into small spaces next to people I've never seen and most likely will never see again. I people watched and shared a smile with those whose eye I caught. A mom and dad were bringing their two young children out into Boston, a young woman had the most extraordinary shade of teal hair I have ever seen, an Asian man in a suit was having a conversation on his phone, and friends were talking over a picture from Facebook.

I left MGH two hours later feeling very self-conscious with a fantastic wire taped in place to my nose, face and neck and a journal to record time and what sort of symptoms I experienced. The nurse who finally got it in laughingly said I would have my choice of seats on the train. I thought he was kidding....
On the way home though, he was right. Suddenly I wasn't being jostled, and I had seats around me that were empty, everyone would just rather stand. I tried to people watch, but that was an experience in itself. People seemed embarrassed to have been caught staring, their eyes skittering away from  my face when I tried to smile at them. The strangest experience by far though was when I got off on my stop and exited the station, a panhandler stopped me asking for money, when I turned to her to explain I had none, her eyes grew wide, she quickly apologized and said "God bless you."
I briefly and sardonically wondered if I should started calling out, "Unclean! Unclean!" as I walked to my husband waiting in the car.
The next day, I experienced the same as I went to MGH to get that wretched probe out. The entire opposite side of the train was filled with people sitting down, trying not to be caught staring at the obvious deformity that marked me as having some horrible disease. People chose to stand instead of sit next to me.
I was so grateful for the literally 5 seconds it took to get that wire out. I handed over my symptom journal, and bee-lined the heck out of there. I hope that is the last time I ever have to have that experience. On the way home, people smiled at me on the walk to the T station from the hospital,  I exchanged pleasantries with a policeman who was watching over some construction. Did he even realise I was the same woman who had passed him by not 10 minutes earlier that he wouldn't look at?
On the T, I had people sitting next to me, jostling me, yes, even on a relatively quiet Saturday morning. I was suddenly a part of society again.

Now, I understand the story in the Bible of Peter's mother in law whom Jesus healed of a fever and immediately got up to serve them (Mathew 8: 14-15). It feels so good to be a part of "normal society" once more.

However, guys...I thought we were past this! Society should be better than this, we should be better than this! Do better than this! Go out and if you see someone who is "visibly sick", take the time out of your busy life, face the fear of illness,  and be nice to them! I don't mean feel sorry for them, I mean, genuinely be nice to them!

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