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?