Updated: Sep 8, 2021
In August of 2013 I became gravely ill. I was so weak I could barely get out of bed, had intense headaches, all over debilitating pain, complete loss of many executive functions, cognitively I was a mess, and began seeing doctors for help. In a matter of 7 months, I was sent to 15 different doctors, all with different specialties. Most of them agreed I was suffering from Fibromyalgia. I was miserable, a shell of my former self and not residing myself to surrendering to a lifetime of this kind of misery. I also refused to accept my diagnoses, I was my kids only parent and did not have time for this kind of “bologna” in my life. I began to research my symptoms, I forced myself past my limits, I stopped seeing the menagerie of doctors who kept poking, prodding, and prescribing, and started believing I was going to be well. I asked others to please stop concerning themselves with my wellbeing and let me worry about me.
I stopped believing I was sick and started caring for my current conditions as part of life. After about 6 months I almost felt myself again, I was pretty functional cognitively, my pain was more a mild achiness, headaches were gone, and my decisions were rational. I went into my General Practitioner about 18 months after it all began for a regular physical and she started by correcting my FMS diagnosis to Systemic Exertion Intolerance Disease as they finally had a diagnosis that matched up. She asked how I was doing and I told her “great”. She was astounded at my recovering given the long-term care generally needed for SEID.
Much like the care of schizophrenia in developing countries I turned my focus from something being medically wrong with me to a condition of living (Watters, p137). Through changing my mindset about my condition, how I choose to manage my condition, how I choose to talk about my condition, and how I allowed others to talk about my condition, I was able to work with my condition. “When humans don’t assume, they have a rather complete control of their experience” (Watters, p159). Therefore, by removing the emotional fuel from the fire, from the recovery and healing process I, like those in the developing countries were/are better able to experience their condition without fear or pressure for recovery.
In developing countries there is far less pressure put on the individual to get better, to heal because schizophrenia is seen much more an outside influence rather then something that an individual has control over. Outside influences such as a spirit possession, or as “just how things are” (Watters, p149). There tends to be a lower level of emotional expression and guilt toward those with schizophrenia in developing countries. In more industrialized countries the expressed emotions towards those with schizophrenia is higher. The caretakers become almost obsessed with the care of the ill and in turn almost create a cycle of keeping the sick, just that… sick. Some caretakers go as far as to give up their whole lives to be in service of those with schizophrenia (Watters, p169), the creates almost a trap that both the patient and the caregiver fall into that impedes healing.
In Western culture we have become so conditioned to requiring doctors and medicine to heal us that we never give time to the patient to heal themselves or for them to work through on their own in their own time what the issues or conditions my be. We have become so accustom to instant gratification that we feel everything has to have an answer and be solved “right now”. By leaving space and time for and individual to process, express, and just be in their condition with not pressure, time lines, guilt or concern for anyone but their well-being this may allow those with schizophrenia in Western society to come into the light and show more successful gains in their recovery. Sometimes it is the caregiver who needs the patient more than the patient needs the caregiver.
About six months after I got sick and could barely function, it took everything I had to attend a family function. I was there no more than 15 minutes before my mom looked at me and said, "Can't you just get over it already, it is all in your head I'm sure. You don't look sick" Those two sentences sent me to instant tears and created a rift between my mother and I where we did not speak for over a year. "It's in your head... You don't look sick... Get over it..." The following weeks after that conversation with my mother were almost unbearable, almost like my mind had to prove to my body and everyone just how sick we really were.
Through years of observation, I have found that it is human nature to want to place blame, on something tangible, when something bad happens. This is especially true in Western cultures. When there is no logical place to lay the blame then we start accepting the blame as our own and want to fix it or make it go away. We want to make it all better and we become overly invested in the process and not only get in our own heads about it but then because we don’t want to fail them a second time we get in the head of the patient. This adds fuel to the fire, the more we act like they are sick and we have to help heal them the sicker they may become in order to allow the care to be give and to follow the inferred thoughts of the caregiver that the ill must remain ill in order to be cared for.
My daughter has some 25 specialists. In the last 2 years we have gone for her having a GP and an endocrinologist to her seeing a specialist in almost every field of medicine. Please don’t get me wrong my daughter’s conditions are nothing to sneeze at, however, every 3 months I ask the doctors “Do I have Munchausen By-proxy? Is it possible I am making my daughter sicker by following all these strings?” It is very hard; it is literally exhausting being a parent of a chronically ill child. Caring for her illnesses have helped to foster illness in me and I wonder if some of these illnesses don’t maintain or manifest because her mind believes if we are looking for them then they should be there. Such a slippery slope it becomes and that is why we have reduced the total visits a month in hopes to see change, progress, and better quality of life for my daughter.
Like said on page 162 of Watters book, I do not believe that white Americans lack sympathy or kindness in the care of the mentally ill. I think it is more of the fact that we are more likely to accept blame for the illness and hold ourselves accountable for the illness in others and it is that blame that causes us to want to help as much as it causes us to want to escape from the shame and guilt of failing our loved one. In the case of schizophrenia, we have also been long conditioned to not fully understand exactly what the illness is, ho it impacts the brain, or how the different types can manifest. Mainstream television programs have portrayed schizophrenia as an illness that is to be feared and it has created a stigmatism making it harder to properly educate the masses about in full.
Watters, E. (2010). Crazy Like Us: The Globalization of the American Psyche. New York. Free Press