Monday, November 14, 2011

An (very long) Observation

I have a pretty specific perspective on life in general and how I treat my disability in particular. By specific, I don't mean extremely detailed; I mean formed from my positions in life. I am young, a woman, attending a small residential liberal arts college in New England, poor, a feminist, and plenty of other things besides. As a college student, I talk to tens of people on most days of the week. As a house manager, I'm expected to be responsible and to be a resource for my residents and the community at large. I developed this disability (or maybe it would just be recognized?) in my freshman year of college, and was quickly diagnosed with Sjogren's Syndrome. I went through elementary school with epilepsy, but in middle and high school I was pretty "normal" health-wise. Unlike epilepsy, for which I had a "long shot" at outgrowing it (whatever that means; I haven't had a seizure in over ten years), Sjogren's syndrome doesn't seem too likely to just go away, and so I'm suddenly looking at a lifetime of dealing with this particular form of disability.

Don't get me wrong; I have plenty of things going for me. I'm extremely motivated to do well and learn, and to find a job after college that will allow me to support myself completely independent of my family (though that isn't likely to happen right away). If I don't do those things, I will be struggling for survival. (I mean that in a literal way; as mentioned, my family is poor, so I don't have too many resources to fall back on in the financial department, and if I don't get health insurance, I'm pretty sure I won't be able to make a living because I'll be in too much pain to do so.) I'm also what's called "Gifted" as far as academics go. I was one of those students in high school who didn't even find AP courses terribly difficult, except in the amount of work assigned. College was the first time I ever struggled to pass a class (it was Chemistry, a science I didn't particularly like anyways, but I thought I was pre-med then, and my study skills sucked due to the didn't-need-to-try thing and also the bad school district thing). At any rate, I'm very capable of doing many different kinds of mental work, and greatly enjoy doing them.

But all of these things give me a pretty biased view of life. It's very different from the one held by, say, a woman* I know who is in her 50s, never went to college, manifested fibro-myalgia in her 40s, has three kids, has limited access to and knowledge about the internet, and sees a limited number of people on any given day. Or any other variation on the many parts of a person's identity.

These kinds of things pop out to me when I try to discuss my particular needs with people whom I need to respond to my needs. The woman in the paragraph above is someone I alluded to indirectly in my post about Everywo/man MD; she was one of the people upset when I asked everyone who could read my facebook status to stop offering me unsolicited advice. Her thoughts were that she knew what I was going through, so she should be able to offer this advice without me getting mad at her. Thing is, she doesn't know what I go through. Sure, some of her symptoms are similar to mine, but she doesn't talk to dozens of people each day, and she doesn't attend a college where she has an extremely high chance of running into at least 10 people who genuinely want to know how she's doing each day, and she doesn't have many of those people respond with either oft-repeated (and sometimes useless) advice, or clueless advice. Beyond that, every person has a different response to stress, and so things that work for her are useless or actively harmful to me.

This isn't a one-way exchange, though. I can empathize with other people who have chronic illnesses or disorders, but I don't know everything that goes into their days, and I'm not in their head. I try to be mindful of this when interacting with people. It means I frequently remind myself not to offer advice if someone clearly just wants someone to listen to them, although I can't say that I'm 100% successful at this. Part of my job is offering resources to other students, but I try to frame this in terms of, "these are some of the options I see for you; do any of those sound like a good choice for you? What would you like to do?" (Though not necessarily in that order.) I do this because it's always better if the student feels that he or she has an active role in the decision-making process, and arriving at a solution together builds self-esteem and problem-solving skills. On the other hand, if I tell my peers what to do about their problem, they're far more likely to reject it and feel resentful.

It's all about perspective, and agency.

To bring this back to my original point, the values and strategies I use in my life for assessing and acting on the world around me come from a set of biases that are specific to me. These are not the same values and strategies that someone even from a similar background and in a similar situation will necessarily have, and they come from a very different place from someone with different biases. There are generation, educational, racial, ability, and gender differences, to name but a few, and they all affect worldview.

Edit: What are your perspectives? How do they affect how you view the world? Have situations come up for you where you really noticed how differently someone else views things because of hir perspectives? [Feel free to answer any, all, or none of these, either here or in your own space. I'm just throwing some thoughts out and fishing for responses that might have an impact on either myself or others.]

[Apologies also for tangents/lack of cohesiveness, if they exist. I didn't outline first.]

*Without getting her permission, I'm not going to post either how I know her or her (first) name. If, at some point in the future, I get that permission, I will use it in posts at that time. I may come up with pseudonyms in the meantime, but we'll see.


  1. I've been reading a few of your posts lately (via Shakesville), and was trying to decide how to introduce myself. :) This seemed like a good time to do so. Your situation reminds me a lot of my own. When I was a freshman in college (10 years ago), I started having problems with fatigue and headaches, and I also had mono (and have had some sort of viral infection pretty much every other winter since). Eventually, I was diagnosed with hypermobile joints which apparently causes my fatigue, and I'm sensitive to fluorescent lights, which was what causes some of my headaches.

    4 years ago, after getting tonsillitis for the second time, I had my tonsils taken out and my health started sliding again. At this point I struggle with daily chores and have to plan way ahead to just get out of the house for a bit. I feel pretty stuck; I don't know how to get to a place where I can just live life again. I hate that most of my inner monologue is "I feel miserable".

    I look forward to reading more of your posts, and it may inspire me to write a bit more about my own experiences! And I'll be thinking more about how my perspective affects my life...

  2. Hello Megan! Thanks for sharing part of your story. I'm sorry to hear you're feeling stuck. If it helps any, I hear you, and I hope things get better for you.

    Thank you also for your feedback. Given how new this blog is, I'm still nervous-hopeful every time I post something thinking that maybe someone will respond. :)

  3. I am a female college student. I am from a small town and I consider myself to be the epitome of average. I am somewhat stubborn, and like to think about moral issues in terms of black and white. I strongly believe in fairness. And I try very hard to be respectful and honest.
    The lack of visible hardship in my life I believe impacts my views greatly. I have little patience for people who exaggerate their pain or complain for attention. I don't know what it's like to be sick or to have serious family issues. Empathy is not usually one of my strong suits, I am often better at playing "devil's advocate" so to speak.
    I also find myself sometimes jealous of people who have concrete, universally accepted problems in their lives. I have no reason to fail and no excuse for not succeeding. I tend to judge myself as I believe others would. This leads me to find myself at the top of the "well at least you aren't..." chain. As in, no one would say, well at least you don't have her problems.
    So while many people probably believe that my life must be wonderful, there is the side to it that makes me feel guilty and/or unworthy for asking for certain things, because I don't need them as much as other people. And that when things go poorly, all the consequences fall on me, I can't pass them off on something else in my life.
    So this is a really long-winded way of saying, that I find it hard to relate to people who struggle, and it is more my nature to say "suck it up" or find a solution, than listen to people wallow in sadness. It's hard for me to imagine what having large difficulties in life must be like and as I said, the jealousy component plays a role in how I deal with some people.
    I hope this kind of answers the question, or at least is coherent!