“But You Don’t Look Sick” and Other Things I No Longer Want to Hear
J. Elizabeth Lawrence Dixon, MSW, LMSW
This article is written using an autoethnographic style that mixes qualitative and quantitative research via literature review. The author recognizes that this was not an exhaustive literature review. This narrative approach was used to explore the psychological and physiological changes Cushing’s Disease/Syndrome (CD/CS) experienced by the author, following her journey from beginning, middle, and post-operative stages of the illness. Due to variances in the disease such as tumor type/size/location, outcomes vary from patient to patient. There are other intersectional issues related to disease outcomes that are not explored in this piece such as gender, race, ethnicity, and other cultural considerations. This is the author’s personal experience of CD/CS and the internal and external struggles she encountered while living with CD/CS, the co-morbid issues post op, and becoming a scholar and clinician in her field.
Keywords: Autoenthnographic, cushing’s syndrome, cushing’s disease, psychiatric disorders, neurological disorders, cognitive impairment, quality of life
I remember quite clearly being told, by a doctorate level professor, that chronic illness would not cause PTSD, however research shows that the process of being sick from treatments to life shattering experiences can play a role in developing PTSD like symptoms (Alonzo, 2000). I clearly remember how I was sitting when a mental health Provider mentioned he thought I had PTSD, depression, and probably generalized anxiety disorder. The process of dying is traumatic, to say the least. Cushing’s can mean dying slowly, with no power, with little help, and in pain. Being invalidated by those around you from friends, coworkers, and medical professionals can become debilitating. That was me from 2010 to 2014. I had been sick since as early as 2008, but the symptoms became prevalent in 2010 and unbearable by 2012. I mark 2012 as my sickest year with the following two being a blur.
Cushing’s Disease/Cushing’s Syndrome (CD/CS) floods your body with large amounts of the stress hormone called cortisol. Cortisol, in large amounts, slowly weakens your body’s systems. Too much cortisol can also impair the hippocampus causing hippocampal atrophy. Cortisol also causes cognitive decline due to neuron damage. Now the hippocampus helps control mood, so it is not surprising that many patients diagnosed with CD/CS report depression, anxiety, with suicide ideations becoming a concern. Cushing’s patients showed decreases in verbal and spatial memory, even after remission (Jin et al., 2016, Tatomir, Micu, & Crivii, 2014).
Individuals diagnosed with PTSD show changes in brain structure, with the person experiencing things such as mood changes, difficulty concentrating, dissociation, isolation, anxiety, nightmares, and even flashbacks. The brain shows changes in the frontal cortex, the area that is responsible for executive functioning such as planning, organizing, and sequencing and changes in the temporal lobe. The limbic system is altered leaving an individual with memory and emotional regulation (Zambrano-Erazo, 2017).
In 2013 my hair started to fall out significantly. Clumps of beautiful, pearly white hair in my round brush and on the floor. I started to developed thin spots and bald spots. After watching this occur for weeks, I broke down and started to hysterically cry. My husband held me, trying to make it better with love and jokes. He promised if it got worse he would use all his money to buy the nicest wig possible. I called out of work. The intrusive thoughts of dying and wanting to die were unbearable. I was afraid to leave my home and be around others. I did not have the energy to explain to anyone that I was sick. I could no longer “pass” that day.
By 2014 the striae was so bad I could no longer hide the parts that crept down my arms and behind my knees. Little purple spider webs encasing me, showing how thin my skin was getting. I could feel my skin slowly rip. I waited for everything to just splash out onto the floor like some horror movie. I had stopped looking in the mirror long before then. I am not sure when I stopped making eye contact in situations where I did not have to. I avoided walking in front of reflective surfaces. When I did look in the mirror to apply layers of makeup, I no longer recognized my face.
The term “passing” as Alpert (2012) wrote explored the paradox of when a chronically ill person can “pass” as a healthier one or allows that person to minimize the illness. This façade of “passing” lessens the anxieties of the healthy people surrounding the chronically ill person, while allowing the ill person to pretend that he or she is “less” sick. For many chronically ill persons, it is almost necessary to “pass” at work or school, assuming those are spheres the person can still engage in.
The idea of being required to “pass” to engage in society is just as deviant as Parsons’ sick role theory, that argues ill people have certain rights and responsibilities, one of those being to get better quickly. This places the blame on the sick for being sick, setting expectations of wellness that cannot be achieved in chronic illness cases. When one goes undiagnosed you are not “sick.” You are simply existing as a deviant to the healthy (Rebman et al., 2017). I tried to pass all the time wearing nice clothes, having immaculate hair and makeup, always clean, trying to be stunning. I tried to hide the death that crept up under my dark circled eyes, thinning skin, and ultimately losing my memories or at least having difficulty storing new memories.
Physically, I slowly deteriorated and felt the need to explain to every person that it was not my fault that I was fat. Over and over again, I had to make an excuse for being sick. I had to prove I was sick, because I was told “you don’t look sick.” Even after I was “cured” I still presented myself as this creature that was only chubby because I had had a tumor and I was still healing. While that was true, I compulsively explained myself to everyone trying to “pass” during every moment of my illness (Alpert, 2012). It was an insane dual relationship of pretending to be a healthy person, failing at it, and simultaneously explaining and denying that I was this sick person too.
Klest, Tamaian, and Mutschler (2017) introduced the term betrayal trauma referencing an interpersonal form of trauma between the victim and the perpetrator. Betrayal trauma is described as high-betrayal and low-betrayal depending on the level of trauma. High betrayal would include survivors of abuse while low betrayal was defined by traumatic incidents such as natural disasters. This in no way minimizes how the person experienced the trauma nor does it mean professionals should scale trauma, making some traumatic incidents have more weight than others. Trauma is defined by the individual. Trauma us trauma. Individuals experiencing high-betrayal trauma report lower quality of life with poor relational and health outcomes. Those with high-betrayal are less trustworthy that leads to reduced patient provider relationships.
I burned through four endocrinologists before the last one told me I had Cushing’s, just by looking at me. The one before was a naturopathic doctor who suspected I had it, but plainly told me it was out of her scope of practice. The one before that told me I was fat and it was my fault I was sick. The ones before that I do not remember because they had come to a similar conclusion, I was not sick. I was often seen as a “psych case” because my symptoms appeared to be psychosomatic, meaning the diagnosis belonged to something in my head. Health care providers shy away from behavioral health issues or worse view them as a persistently difficult case to manage (Klest, Tamaian, & Mutschler, 2017).
ED doctors could be the worst. I noticed it felt like my BP and heart rate were high despite being on a blood pressure medication. I felt anxious, sick, could not focus, and was out of energy. I went to the ED thinking something was wrong. I was given Benadryl and told to go home. A few days later I had a full-blown panic attack and almost crashed my car in rush hour traffic. I was sobbing and somehow made it the three blocks it was to my apartment. I know I would have to go back to the ED and once again be a “psych patient.” This meant dealing with medical providers discounting my symptoms, ignoring them, and ultimately reinforcing my hesitancy to seek help (Klest, Tamaian, & Mutschler, 2017).
My husband took me back to the ED and stayed by my side. They put me in a waiting area where I began to feel worse. I finally told my husband to tell staff my chest hurt so I could be placed in the cardiac area. My insides tightened as I lied and told another person to lie. I kept thinking there are people here who are having chest pains, maybe I should not have said that. The detrimental, psychological position of “passing” was interfering with my ability to advocate for my care (Alpert, 2012).
They made me walk, but I finally could lay down and be seen. The ED doctor told me nothing was wrong and I was having a panic attack. I told him he was wrong. He walked away visibly irritated with my attitude. I was hooked up to a monitor, each time the cuff expanded turning my arm another shade of prickly purple. Forty-five minutes later he came back and told me something was wrong. I was given a dose of a beta blocker and my heart rate dropped, reasonably lower. I was given a prescription and told to rest. I could have had a stroke or worse if I had simply taken more Benadryl and gone home.
The second time the ED did not listen I almost lost my uterus to an ovarian cyst the size of a ripe grapefruit. The first ED visit in this case, where I presented with spotting and pain resulted in a discharge home to have a surgical procedure done on an outpatient basis. I was having a hard time sitting, standing, living, but this could wait per the male doctors. When I went to the outpatient clinic they had made a mistake and had to reschedule me a few weeks out to see the surgeon. I cried in the office, in front of a crowd of expectant and new mothers.
I had been failed again. I drove myself to the ED, for the second time, to address this issue and when I made it past triage I told the nurse I would not leave until the cyst was taken out. I gave my husband that ornery, stubborn, resigned look and he knew security would have to drag me out. The NP who initially had my case loudly called me a “med seeker” outside the exam room door. I had declined all medications including Tylenol before and during her exam of me. When she saw the size of the cyst, she called the OB clinical team. I was in emergency surgery within the hour. I was told I could have lost everything—almost a year later, I became pregnant and had my son. I almost lost him. These simple stories feed into an ongoing betrayal I felt each step of my illness, and illness that left me vulnerable to psychiatric issues, and then the physical and emotional trauma I experienced during the illness. This ongoing perception of provider betrayal has permanently altered the way I interact with medical providers, leaving a persistent feeling of mistrust in their ability to care for me or show me empathy (Klest, Tamaian, & Mutschler, 2017).
The poor medical response is not specific to Endocrinologists and ED docs. PCPs and urgent care MDs, DOs, PAs, and NPs could be just as bad. At a work physical, I was told to lose weight even though I started off the conversation that I had been diagnosed with Cushing’s 10 months earlier. The MD felt it was my fault I had a tumor on my pituitary gland. Other providers still glanced at me with disbelief when I tell them some symptom or a reaction to a medication. Something happened to my immune system and I do not tolerate medications and many foods now. I survive and make do. I once told a PA “oh, that’s normal for me” she quickly dismissed me saying that those symptoms were not normal. Well, they have become a part of my “normal.”
Pivonello et. al (2015) explore the quality of life for CD/CS patients who are in remission. The research concludes that even post-op Cushing’s patients experience ongoing psychiatric and neurocognitive concerns that includes major depressive disorder. The study found that in the symptoms may improve during remission, the symptoms may continue, or worsen over time lowering the quality of life. What should be taken away is, Cushing’s patients experience some level of psychological distress due to cortisol and the injury that is being chronically ill. This issue of depression, suicidal ideations, and dying from suicide is not discussed as thoroughly as it should be.
While my personal journey has been filled with comorbid issues such as major depression I have also been left with life altering physical changes such as the beginnings of osteoarthritis, degenerative disc disease, headaches, and sensitivities/allergies to the world around me. Despite the issues my mental health has improved and with each year post-op I find myself less tired, in less pain, and with fewer headaches. I am a CD/CS post-operative human who will admit that I have had suicidal ideations related to this disease and have one gesture/attempt to end my life in 2013. It was a dark, scary, and hopeless place to be. At that point it was easier to want to die, than continue to fight against a medical system that would prefer to discount me, blame me, or worse not know what to do with me.
I have surrounded myself with an abundant support system of professionals, colleagues, friends, and family who are invested in my wellbeing. I have learned to look inside myself, take an introspective approach to my physical and mental health, and check in with those close to myself. Perhaps it is partially me reality testing because I am so painfully aware of mental health outcomes with individuals with CD/CS. I have learned to trust and have established professional, yet empathetic relationships with my medical providers. I have interacted with caring NPs who understand that letting me vent about an issue, one that will not change overnight or maybe ever, is valuable to my ongoing care. Sometimes I still panic if I gain a few pounds in a week, or if I think my face looks too round, or I wake up from a dream about my hair falling out. I still have mediocre days filled with headaches and irritability that I wish I had never gotten sick. But, I have learned so much from my experiences and I am alive. I am grateful.
J. Elizabeth Lawrence Dixon is a Social Justice Advocate and Mental Health practitioner. She is currently a Travel Social Worker spending somewhere between 12 weeks up to 9 months in any given location. Her experiences include a 12-month service with the AmeriCorps VISTA program, school social work, crisis response, inpatient psych, IOP/PHP programs, first responder Fire Department crisis response, and medical social work. She has an BSS in English Creative Writing and Gender Studies from Ohio University. She completed her Master of Social Work program in 2016 and quickly jumped into a Doctorate of Social Work program, spending many a night questioning that particular adult choice. She is a member of the National Association of Social Workers, The EPIC Foundation, and the International Federation of Social Workers. Her favorite icebreaker during group work is having someone ask about the tattoo on her right hand (palmistry). No, she cannot read your palm. Her passions include learning, tacos, podcasts, reading about neuro things, chasing her toddler son, writing, and becoming an avid twitter user [Ms.LMSW @ElzbetHart] despite the belief that twitter is going to be the downfall of the English language.
Alonzo, A. A. (2000). The experience of chronic illness and post-traumatic stress disorder: the
consequences of cumulative adversity. Social Science & Medicine, (10), 1475.
Alpert, J. L. (2012). Loss of Humanness: The Ultimate Trauma. American Journal Of
Psychoanalysis, 72(2), 118-138. doi:10.1057/ajp.2012.8
Klest, B., Tamaian, A., & Mutschler, C. (2017). Betrayal Trauma, Health Care Relationships,
and Health in Patients with a Chronic Neurovascular Condition. Journal Of Aggression,
Maltreatment & Trauma, 26(1), 18-33. doi:10.1080/10926771.2015.1107175
Jin, R. O., Mason, S., Mellon, S. H., Epel, E. S., Reus, V. I., Mahan, L., & … Wolkowitz, O.
(2016). Cortisol/DHEA ratio and hippocampal volume: A pilot study in majodepression and healthy controls. Psychoneuroendocrinology, 72139-146. doi:10.1016/j.psyneuen.2016.06.017
Pivonello, R., Simeoli, C., De Martino, M. C., Cozzolino, A., De Leo, M., Iacuaniello, D., …
Colao, A. (2015). Neuropsychiatric disorders in Cushing’s syndrome. Frontiers in
Neuroscience, 9, 129. http://doi.org/10.3389/fnins.2015.00129
Rebman, A. a., Aucott, J. N., Weinstein, E. R., Bechtold, K. T., Smith, K. C., & Leonard, L.
(2017). Living in Limbo. Qualitative Health Research, 27(4), 534-546. doi:10.1177/1049732315619380
Tatomir, A., Micu, C., & Crivii, C. (2014). The impact of stress and glucocorticoids on memory.
Clujul Medical (1957), 87(1), 3-6. doi:10.15386/cjm.2014.8872.871.at1cm2
Zambrano-Erazo, S., Guzmán-Villa, D. C., Hurtado-González, C. A., Seminec, D., la Cruz-
Cifuentes, D., Triviño, O., & Olayo, J. (2017). Neuropsychological abnormalities in patients diagnosed with
post-traumatic stress disorder. Biomedical Research (0970-938X), 28(6), 2609-2616.