Welcome to Chronically Juliann! I use this handle because I suffer from multiple chronic conditions, some of which interact and interfere with the others. Stress absolutely makes my adrenal failure worse, and therefore more dangerous. But bipolar disorder is stress inducing. As is colitis, which can flare without warning. Any one of these diseases can land me in the hospital, but when they work against each other it becomes clear that I will require a long hospitalization.
I am currently admitted to UAB for a myriad of symptoms and a cocktail of issues: Abdominal pain, check! Stomal swelling, check! Rectal bleeding, check! Low immune response, check! Tachycardia, check!
While I am grateful to be admitted and receiving IV fluids, pain medication, and frequent vitals checks, it is unbelievably stressful and aggravating to be here again. I feel like the doctors do not listen to me or take my opinion into consideration. I began to get scared and feel terribly bad for the patients that can’t advocate for themselves because they don’t have a medical background. Then I realized they may have an advantage, because when I speak medical jargon and specify names of sensitive tests, I truly believe the doctors think I google symptoms and webmd info to “get what I want.” When in actuality, I have worked in the medical field for 8 years and have suffered from chronic illness for almost 15 years. Therefore, my knowledge is from a lived experience and high level training.
Also, I watch the doctors (especially male doctors) take my husband’s opinion more seriously than my own. I can tell them about my pain and bleeding and they don’t seem to care, or come up with a plan to evaluate. But when Will mentions the same issues, suddenly new tests are ordered or consultations for different doctors are finally being placed.
I decided to look into this more and found some disturbing statistics. Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. For example, women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes. In regards to the issue of chronic pain, women account for 70% of the people diagnosed, and yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. The exact reason for this is still unknown, and more studies are warranted. However, as previously noted, research on female pain remains limited and therefore likely will not be completed.
Research indicates we are not listened to and feel our needs are subordinate to that of the “system” (which includes the insurance companies and hospital administrators.) It is increasingly apparent that hospital staff (nurses and doctors) are unable to be sufficiently patient focused because they are beholden more to shareholders and administrators than they are to their patients. This may not be a fault of the individual, but rather a systemic problem that is perpetuated by profit margins and lobbyists. However, it is the patient that suffers because of it.
While this all feels seriously discouraging, I am going to continue to advocate for myself. As stated in my previous blogs, I as a patient know more about my body than physicians. Today when my team of doctors come in to round, I am going to be firm in expressing my concerns and desires. I want to know where my bleeding is coming from. And I would like my pain better controlled. Not because I am hysterical, but because I am experiencing real pain.