I had an experience during the second year of my PhD program that has bothered me and stuck with me ever since, for about the last seven years.


scarystoryCaptureI was taking a class on disability studies and we often had guest speakers.  This particular person worked at the University and dealt directly with disability issues.


However, she started off her talk by telling the story about a friend of hers.  This particular friend was wheelchair bound due to rheumatoid arthritis, and as the speaker told us, her friend died of stenosis of the windpipe due to RA.


At this point, I was really still learning about my diagnoses and what living with lupus and RA meant for my life.  I knew I was sick, and there were points at which I thought I might be dying, but I don’t think I ever really gave thought or credence to the idea that I would actually die from RA.


I remember feeling sick to my stomach during the talk.  I wanted to run out of the room.  The walls felt like they were closing in on me.


I think what bothered me the most is that this person worked with disability on a daily basis, but clearly couldn’t imagine that anyone in the room was dealing with RA.  Otherwise she wouldn’t have told the story.


And who would think that?  Unless you’ve been there, most people think that RA is a disease of older people.  So why would she assume that one of the twenty-somethings in the room would be dealing with this disease?


Part of me also felt like the story was a bit of tokenism, like I had a friend with a disability, so therefore, I must be an ally to people with disabilities.  Except that she wasn’t.  I dealt with this person several times and she was absolutely not an ally to people with disabilities.  She just wanted to make sure that the University didn’t do anything that would get them sued.


This meant, for example, making the doors to the art museum electric.  Previously, the handicap entrance was in the back through the dumpsters and service entrance.  I remember this person vehemently complaining about how much it cost to make a very old, artistic door electric, and that the accessible ramp made the front of the museum look ugly.


I guess knowing this, I shouldn’t have taken the story of the friend with RA to heart.


I guess, to me, the better question is why wouldn’t you think there could be someone in the room dealing with RA?  I guess that’s the curse of living with invisible illness.  You wouldn’t know I’m sick by just looking at me.


I think there are well-meaning but ignorant people in the world.  There are people who try to help you, even though they can’t.  For me, part of my coping with my illnesses was that I feverishly read books about lupus and RA.  I wanted to know everything there was to know about these illnesses.  But had I not wanted that and people forced it on me, I wouldn’t be happy about it.  And not everyone has the same compulsion to read about their illnesses as I do.


And I didn’t ask for random people to tell me stories of people they know with lupus or RA that died.  Just like I don’t need to hear from people about people they know with lupus or RA that are completely fine.


In some ways, illness is an intensely personal experience, and we all have boundaries.  For me, my boundaries were crossed the day that I heard about someone dying from RA due to stenosis of the windpipe.