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, 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.
It appears at times that Doctor's will 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. Some (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, even if symptom management is all that we can do. And trust me, there are some rather awesome doctors around! I can admit that.
A little suggestion from a patient, please 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, losing the careers that we worked so hard for and even loved, watching our family worry too much, or even 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 challenge. The frustration of some 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. Unfortunately, some doctors create more harm than good.
Don't get me wrong - there are magnificent doctors around as well. They 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.
The thing is, when a someone is already struggling and falling apart from illness and it's impact on daily life, a doctor has the power to throw the life line to help or the anchor to make one 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.
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 2011 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 so I was rushed back to the ICU. A day or two later, after I stabilized, 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 doctors later told my family and I that I would likely have died if I had been discharged from the ER. I was fortunate. During the madness, someone did step up, listen, and take care of my needs.
I have other memories 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."
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 over the past few years. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of previous medical experiences. Stating that, I must give credit to the doctors (and nurses) that did listen and help me in the midst of the negative experiences. Additionally, I must remember that, like us - doctors are human. Like us - doctors choose how to react and will make mistakes sometimes. Like us - doctors have good and bad days. Which unfortunately doesn't make being vulnerable any easier.
I have had and currently have some wonderful and greatly appreciated doctors. Even though I may trust them, how much I actually open up or let them know depends, as I find it pointless to keep repeating the same issues/symptoms over and over when I know that there is no simple fix. But knowing that there are knowledgeable and compassionate doctors that are willing and wanting to help is most definitely reassuring.
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.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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