I have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion.
Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears.
I've been dismissed, ignored, laughed at, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp.
And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along.
I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay.
Unfortunately, doctors like this are extremely hard to find and quite honestly can be like finding a needle in the haystack. Doctor's suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Many (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure. As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements. Don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, lose the careers that we worked so hard for and even loved, watch our family worry too much, or begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes.
We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how?
According to urbandictionary.com, the definition of Vulnerable is
"Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!"
Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challege.
The frustration of doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Some doctors are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life . Unfortunately, some doctors create more harm than good.
When you are already struggling and falling apart, a doctor has the power to throw the life line to help you or the anchor to make you drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin.
For example, right before my freshman year of high school, I threw up every single morning, never failed. If I had eaten nothing, I would vomit stomach acid. I LOVED school. I was not in a specific clique. I was not bullied. I had all kinds of friends, was a scholar athlete, etc. But first thing every morning I was sick that year. Most mornings I wobbled away from having a bowel movement in a light headed daze, collapsing on my bed, as cold sweats, nausea, and a spinning room overcame my senses. I felt like I was going to literally pass out, and sometimes actually did. (Possibly unrelated or due to the daily pepto-bismol.) Later in the morning, I would finish preparing myself for school, and head out to begin my day. I didn't have an appetite at school, but made myself eat a little something followed with a little coke to help "settle" my stomach. Around mid-day things began to improve for the rest of the day and evening. My weight remained balanced because I was able to get calories in during the remainder of the day. I was able to function and attend school, not allowing myself to stay home unless I had a fever. We spent months trying to seek help from doctors. I was told that I was making it up, that I was lying, etc. Labs looked okay. It had to be in my head, they said. I was a virgin and was even accused by my family doctor at the time, for lying about that. This led to my first experience with having a female pelvic exam to "prove" the truth. I was 14 years old. Instead of helping me, the doctor traumatized and harmed me, just to admit that I had been telling the truth all along. I never had any sort of intercourse, so now that had "proof" that it couldn't be related to that. But then, that was no surprise, I already knew that! I was just not heard or believed by my doctor. Seriously, how unnecessary and unnerving is that experience to a young teenager? I left once again with no answers, my personal privacy invaded, lack of sexual intercourse proven, and a newfound fear of doctors. I was hurt from the distrust and exam, while also embarrassed and confused about why this was happening. I was terrified to return to this doctor, dreaded and tried to avoid any other doctors. I did everything I could to avoid vocalizing my continued symptoms. I pretended to be alright and ignored the troublesome morning "routine". In Feb of my Freshman year of high school, after months of vomiting and burning abdominal pain, my dad took me to a nearby children's hospital. There we immediately discovered that I had a few stomach ulcers, which were healed relatively easy with zantac. My symptoms resolved. If we had not left and decided to finally seek help from a university children's hospital, who knows how long I would have SUFFERED without help.
Another prime example?
I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend, my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room. My blood pressure crashed again after surgery, so I was rushed back to the ICU. A day or two later, after I stabalized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctor told my family that I would likely have died if I had been discharged from the ER. I was lucky.
I have other stories, thankfully not as life-threatening, but still moral breaking and validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine."
More examples of recent negative medical experiences, related to my chronic illness, can be read on the blogs I've linked below. (Note that there are other ones that I have chosen to not write about or share as well.) From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of so many previous medical experiences.
Whirlwind of Negligence
Giving My All
What Defines a Doctor
For the past year, I have become more "accustomed" with how to manage and tolerate my symptoms the best way possible. Trying my hardest not to burden my family along the way. While my family can usually tell when my bad days are becoming too much, they never truly know the complete degree of how bad it gets. I try to protect them as much as possible and don't want unnecessary attention. I have had and still have some wonderful doctors. How much I trust them or let them know depends, as I find it pointless to keep repeating the same issues over and over when I know that there is no simple fix. However, I do reach out to them sometimes, often still with hesitation and apprehension, when symptoms increase drastically with no known reason or become much different from my "current normal."
So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare.