Sunday, March 28, 2010

Attitudes, Perceptions and Expectations

I've been thinking about what shapes attitudes towards my health experiences and perceptions that I am a very strong, brave person. Either hero or victim -- sick people tend to be defined by one of those.

I think the anecdotal evidence I provide about my situation hints to health problems more serious than what I am actually going through. Really, I'm very active and require no further treatment. Medically speaking anyway. But as my med student friend said to me, "meds (or any treatment) artificially putting you there doesn't count as health." I try to remember this when I feel awful. I shouldn't be content with treatment just because it has taken me out of danger. Doctors and others can minimize my situation all they want, but I've been through a lot and I continue to have symptoms and challenges. I have always felt so lucky that I've mostly evaded danger that I feel I should just be content with my "luck." Keep in mind that my "luck" has been defined by the typically "unlucky" experiences by people with conditions or treatments similar to mine. "Luck" also assumes that the medical component of my experiences influences the emotional components.

In my Health and Society classes, I studied Talcott Parsons, who had a theory called the "sick role." Basically, sick people are expected to fulfill certain social rights and obligations, including accepting that they are not able to participate "normally" in society. For example, if you are sick, you are obligated to stay in bed and avoid "normal" function. If you do not adhere to these rights and obligations, you are considered deviant, meaning you don't want to get better or are burdening society. The "sick role" disturbs me because it implies that sick people only have needs based on their medical situation, that they don't require greater fulfillment than to heal. The "sick role" not only disregards the broader needs of individuals such as the need to feel part of society and the need to entertain oneself; it also disregards the obligations the sick person must put on hold to get well and the repercussions of that. Missing work can mean a loss of income or an inability to take care of one's children. Illness can also cause boredom and loneliness.

 I've been thinking about how deviant I've been since I started school in January. How dare I inconvenience people I work with by missing classes because of illness. Why didn't I just wait to get better before I started school? Well, I could spend my whole life waiting. Yes, this Post-Viral Syndrome will go away, but my other conditions likely won't. Instead, it is best that I seek accommodations to live actively while avoiding overdoing it. 

People like me who have invisible health problems, especially those whose symptoms are not quantifiable by medical testing, may also face stigma: accusations of faking illness for attention or to avoid obligations. I have been facing this in my own life this year. I never thought I would, though, because I have medical proof of my difficulties. Perhaps providing this proof, or at least fully disclosing my medical situation, could have helped me avoid implied accusations of skipping classes or being lazy, not participating. I have images of myself throwing my CT scans at insensitive people, pouring heart medications in front of them. Disclosure is such a scary thing, though. It has conditioned people to think I am weak and delicate, less capable (even less willing) to do certain things. Disclosure also puts me at risk of being accused of looking for attention, exaggerating or trying to evade responsibility.

Many times, I have regretted disclosing my issues because I feel badly for subjecting myself to attitudes like the ones I've just mentioned. I dislike statements like "You look good!" This implies:

a) That I should be glad that I at least don't look sick
b) That my claims to illness can't be valid because I don't fit the profile of a sick person
c) That my healthy appearance overshadows the suffering I endure

Perhaps I "look good" because I am happy most of the time? Perhaps it is difficult to conceive that I am happy despite feeling sick?

I must confess that there have been many times in my life that I have wanted to look sick or to have some sort of medical catastrophe. At least then, I will KNOW I have every right to claim suffering and everyone else will too. I am still paranoid that I'm imagining symptoms. I am over-concerning myself with what other people might think of me.

I often tell people I'm sick or have health issues, but I get nervous about it. Can you blame me?


  1. I'd be just as terrified I think, of telling people. For the exact reasons you mentioned - accusations of faking it or exaggerating.

    On another note - I think if you were to throw a CT scan at someone, it would be hilarious. Or showing them various medications. That really would shut someone right the hell up wouldn't it!

    I had a really hard time for ages after I'd overdosed, actually admitting what had happened and why I was gone for a few days. At the start I only did it because I was worried about what rumours my classmates might spread if I didn't just admit it. Since then, I've learned to talk about it and can talk about those experiences with well... a total detachment.

    It was even hard for a while since I never went to get formally diagnosed with depression - I'd refused to go as I didn't want medication so opted out of getting pressured by refusing to go to the appointment. I figured, if I never got diagnosed then I'd never get told "you're imagining it" because hearing "get over it" or "don't think like that" is annoying enough. Really now, if you COULD stop yourself from having depressed/suicidal thoughts or if you COULD stop being stressed out and having panic attacks... you would. It wasn't something I chose.

    What I did choose though, was to muddle through it on my own. Fortunately I managed that, and was mild enough to be able to manage it.

    And damn, just went on a tangent. The point was, is that I get your worry about telling people about it. It's hard. Whether you tell someone or not, there's just always going to be something negative that can be said. Guess you just gotta choose whether you want the "lazy" or "exaggerating" comments which are both equally false.

    I should not write comments first thing in the morning. I forget what I'm saying!

  2. You can't please all the people, all the time. Don't even try - it'll wreck your head.
    There will always be people who just don't understand, who will think you're 'making excuses' or faking it. But these people are not essential in your life. Your professors and later your bosses need to know because your illness affects your capacity for work sometimes. Your friends want to know because it explains what might otherwise be perceived as inconsistent behaviour; having an explanation will give them an understanding and that makes it a whole lot easier to be friends.
    But why expend your precious energy on explaining yourself to everyone else? If you think about it, it really doesn't matter what they think.
    (A philosophy easier said than done, I know, but practise makes perfect..!)

  3. No, Lindsey, don't apologize! I wanted this blog to be a community where people can share their own experiences. A support system. It doesn't have to be directly relevant. Thank you for your honesty. I think you have great points about the vulnerability one may feel with pressure to disclose.

    I agree. There's this wild idea out there that a lot of people CHOOSE to have struggles or just aren't trying enough to get better. It's so unfair and I'm sorry you had to go through that. I can see why you may not want the label "depression." Disclosure can definitely be scary. Thanks for seeing it from my POV.

    You know what Terri, you're right! These people are not worth my time! I'm glad for opportunities where I can see people's true colours, however hurtful it may be. Disclosure can be very necessary or even helpful, as you say, but sometimes that isn't even enough to make people sensitive. THAT'S precisely what scares me. I can't seem to stop caring about what others may think.

  4. I think you are right – it is difficult to live in society and not be hurt by what people say about you somehow. I know that one can say that it does not matter, but it still painful if they say things about you which are not true. But so many people are unfair and uncaring. Mostly, people are very selfish and if they think that you are getting special treatment and they are not, they will squeal and won’t want to hear about your medical condition. So you must try very hard not to care and be happy anyway.

  5. Selfish indeed! Today one of my professors, to whom I had shared information about my health, listened so intently to what I was going through. It was refreshing! It felt so good to open up, but it was a bit uncomfortable for me, even though I knew in my heart he would care.

    Thanks Vagabonde... It's hard not to care about what others think!

  6. I can't recall how I found your blog but I've been going back through your posts. Thank you for sharing your story and in particular this post. You articulated much of what I have experienced in my life as well with the 'sick role' and the incongruity between being disabled and happy. How dare I? :-) I have a physical disability that is apparent to an outsider and I have other illnesses that are not apparent that actually cause me more grief. It's interesting to see how people interact with me based on what they can see, what they know and what they believe (based on their own lives). When you have a disability you often find yourself as the guinea pig for other people's empathy and sympathy barometers! This can be amusing on the best of days and infuriating on the worst. Healthy people have the benefit of riding the waves of life without having to counter, consider or ponder how they will be perceived in everyday situations. For example, if I walk two blocks today but can barely move tomorrow will my co-workers think this is normal or abnormal and will they perceive me to be less than able in my job role, or will they not care one way or another? In others words, will people see me as weak or lazy? Also when you have a physical disability your emotional and mental acuity also is also judged by some who can't differentiate physical disability from mental retardation. There are those who think disabled = wheelchair, medicare and societal burden and those who think tenacious, brave and determined. It's frustrating to be put in a bracket that warrants such reflection. An extra burden on a life that is already peppered with hurdles.

  7. Thanks for your very well written and insightful comment, Kris. One of my goals in writing this blog was to articulate a shared experience. I hoped that those who share my experience would feel well articulated. I wanted to connect with people who understood how I was feeling. It's cathartic, isn't it? Sharing everything in such detail... I forgot to write that I also wanted to use the blog to help people I know and people without these issues understand. Your honesty means a lot to me.

    You made a good point that people tend to either pity or sympathize with what they can see, but not necessarily with what they can't. For some people, it can be a fight to get people to believe.

    I think it can be difficult for people without similar issues to understand how one day you can be active and the next you cannot. Like you said, it kind of puts us in the position of having to wonder how we are percieved because our issues may not be consistent or may be invisible. It's also a pressure to be candid and disclose.

    In this post I wrote about the dangers of disclosure, but I didn't include the assumptions you mentioned. Great point about mental retardation being assumed in some cases. I've worried about disclosing my neurological issues because of that assumption. I'm thankful I haven't really encountered that.

    I think there is a great opportunity with blogs to combat this kind of ignorance or to at least help other people understand why we are the way we are. They can't understand unless we tell them. I never want to assume that people are hateful or that they don't care. Those assumptions are just as mean and dangerous as the ones I have belaboured here.