Anyone with abnormal pain has to face problems such as to make doctors and other people to believe you, to get diagnosis, learning how to cope and live with the pain.
Last summer my friend who is also physics major got sick. Her doctor messed up dosages of her anti-anxiety medications and fried her brain. Then in October under pressure of physics classes, she broke and dropped all classes. I never had doubt that she was in pain, but I never knew the extent of her pain. However, when I got very sick last December and later in March was diagnosed with lupus, I have learned how my friend must have felt. Extent of pain was beyond of anything that any healthy person can imagine.
To make others to believe you and to get right diagnosis is really hard. Like Lena Dunham, like Meghan O’Rourke I had a problem convincing my doctors that I did not imagine my symptoms while they insisted on that my analysis and therefore I was fine. However, thankfully to my mom who believed me, in the end I got my diagnosis. And finally pain became the certainty. However, having diagnosis does not make pain to go away. A diagnosis is a word you use to make people to believe you. But a diagnosis does not make people to understand you.
Convincing or even telling others that you are in pain is a challenge. The spoon theory by Christine Miserandino that describes how people with limited amount of energy and chronic pain have to plan their days is the beautiful way to explain the situation. However, the explanation is not enough since many people still will not believe you because they never felt pain anywhere close to the pain people with chronic pain feel every day. Usually, if you do not look sick, people do not believe you since they may think you are just making up the story to get some attention or not to do some work. In our society a wheel chair, or blindness, or other signs of being crippled are needed to prove that you may not feel well. But signs of being not normal do not give you anything since healthy people realize that their bodies may become crippled too and they diverge their eyes and minds, to hide from a possibility of not being healthy all the time.
Audre Lourde was told to wear prostheses when she came to her doctor’s office because prostheses was important to keep moral in the office full of women already with or with a possibility of having breast cancer. Prosthesis was the sign of being normal, whole, and healthy. So wearing prosthesis, distrusting people with pain, hiding people with disabilities from public life, people try to make society look eternally healthy because the possibility of facing their own mortality, the possibility of being chronically sick or in pain frightens people. So people use ignorance to hide from the truth and distrust anyone who would make them to face fragility of their bodies.
Lynne Greenberg in her “The Body Broken” illustratively shows how hard is to get or never to get right diagnosis, that doctors are not gods and some are quite ignorant, that pain destroys lives. However, in spite of trying to show what kind of hell people with chronic pain go through, Greenberger actually shows how much American society is divided based on wealth and how privileges give access to better health care. The book can be summarized by one quote: “We are polite, even generous overseers of the madness, but always above the fray… We sit midway up our stoop, just high enough to make it difficult to reach us. In control, we casually toss candy from above into the up-stretched candy bags”(“The Broken Body,” page 5). Lynne Greenberg is in control. She is a part of the privileged part of the American society. She can be pitted as someone who forced to live with intolerable chronic pain. However, in contrast to Greenberg millions of people do not have money, access and privileges to get medical attention as good as she does and do not have income to support their families. Apparently, in order acknowledge people with chronic pain, our society needs to listen to a wealthy woman with three non-functional bathrooms in her house on Garden Place, with angel looking children, and with her beautiful lingerie that turned gray in a laundry of the best pain management clinic in the United Stated.
Anastasia,
I’m so sorry that you’re dealing with chronic pain (by the way, “chronicle” has a different meaning; it means to write something down, to note or chart it. For example, you could chronicle your daily symptoms, or chronicle what you ate). You’re quite right to note that we think of invisible disabilities in very different ways than when we can see a person’s wheelchair or cane. This might be helpful for those with visible disabilities, but on the other hand, it can give people false impressions as well. In the Deborah Kent article, she talked about being blind but not thinking of herself as disabled, even though EVERYONE around her, even her parents and husband, thought of her blindness as a disability. To her, it was just blindness, a more neutral trait.