What kind of patient are you? Are you forthright and make sure that you receive the treatment you need, or do you fade into the background, quietly hoping that someone will read your mind?
I am the latter. When it comes to seeking medical treatment I am a wallflower, quiet and overly meek, so frightened of making someone angry or frustrated at me, or of taking up resources that should be dedicated to someone else, that it is near impossible for me to express need. I fear being a burden, I hate to be a nuisance, so I hide my pain, I tell myself there are others who need the attention more than me.
For example; several years ago after a routine operation, I ended up bleeding internally and losing a fair amount of blood. The fact is that I could have very well have died and did put myself in a lot of jeopardy because I couldn’t bring myself to summon the nurse – I could hear her assisting a patient down the hall and didn’t want to be a bother, the lady they were attending to was yelling and screaming in pain, I was sure she needed the attention more than I did.
When I finally did press the call button, I was pacing the room in agony, in hindsight that was not the best thing to be doing. A nurse huffed into my room with an impatient and flustered look on her face, and I smiled and asked for some pain killers because I was experiencing pain. She gave me a dose of something and huffed off again. A few minutes later almost blacking out from the pain and was shaking from the shock my body was experiencing, I shyly pressed the call button again; after taking one look at me a senior nurse was suddenly taking charge of the situation, calling my husband at 1am to tell him things were bad, and being raced to emergency care.
Even as I was being rushed away, I was trying to smile and apologizing to the nurses and on call doctors for being a nuisance. I spent several days in critical care hooked up to monitors, full bed rest, not allowed to move for fear of causing the bleeding to start again. It took months for my iron levels to return to normal and I was incredibly weak for a long time.
I wish I could say the above example was a one off, that I am not usually that spineless and incapable of advocating for my own care, but it is a pattern of behaviour that I have perfected over the years. There have been multiple incidents where I have put my own physical and mental health, even my life, at risk because I did not feel able to ask for help.
It is becoming clear to me that in my efforts to be a perfect patient, that I have actually become a terrible one, why? I’m too polite. Too quiet. Too likely to smile at my doctor and tell them I’m “okay”, even though I’m just desperate for help. I do not want to burden them with my feelings, I do not want to make waves by insisting that they take me or my pain seriously. In a world where both the private and the public health sectors are overwhelmed with patients this means I rarely get the treatment I need, at least not in a timely manner.
One of the things I have been told repeatedly over the past year or so is that it is okay to have needs, and it is also okay to expect to have them met; this does not mean I need to be rude to get needed attention, but I do need to learn to use my voice in a way that means I am not brushed aside because it is easy for someone to do so. I do not need to apologize for simply living anymore.
This week I did something amazing – I needed to see a new physio, something I have been dreading. The past 3 years since my car accident have been spent bouncing my way around between different healthcare professionals while my pain has worsened, and I admit that I did not feel like meeting yet another person who was not going to listen to my quiet requests for help or hear when when I’ve told them that something wasn’t working for me. I sat down, and she asked quite bluntly but kindly “Why are you here?”, I managed to find my voice, the voice that has for so long been too quiet to be heard.
I cried. In front of someone I had only just met. I told her that I had been to see so many different people over the past 3 years and that it felt as though not one of them had actually paid any attention to what my needs were, that I had been treated like a number on a file, and that no one had actually helped me enough to make the exhaustion of attending appointments after appointmemt worthwhile. I told her tearfully that I am exhausted, and that I feel like giving up because nothing has worked and I am sick of trying, dancing to the turn of my insurance company.
While crying was probably not the best way to express my needs, it was a start. For me, it was a huge start, and while I felt rather humiliated afterwards, I was also proud of myself and really surprised. It took desperation to make me vulnerable, but after more than 12 months in psychiatric therapy, I felt like there was just a glimmer of hope that being a reticent wallflower of a person who hopes others can read my mind is not my sole destination in life.
And maybe, just maybe, I will start to become a better, more treatable patient. Because for once I am being honest about the bad stuff, owning my negative experiences and feeling more confident in asking for my needs to be met by those who are being employed to assist me.
The biggest and best surprise of all? My new physiotherapist not only listened, she understood!