So I spent most of today at the hospital getting more tests done, trying to find out why I’m having so many problems breathing.
As a result I was seen by a variety of different health professionals. They were all excellent at the practical components of their job but it quickly became apparent that some of them seem to have forgotten that there is a living, trying to breathe, human being at the centre of this.
I’m deaf. I need to see faces to be able to ‘hear’. I have some hearing with my hearing aids in, which I was wearing today. However, hearing is hard work for me. It takes a lot of effort especially in a busy hospital environment with lots of background noise.
My chart is clearly marked with a nice little bright blue sticker showing the international symbol for hearing impaired/deaf/Deaf. Unfortunately for me, because I have a progressive loss, and was mainstreamed through school, I speak very well (I don’t have the typical ‘deaf’ accent) and I “pass” in the hearing world as ‘normal’.
Due to the nature of the testing that I was having done today I had had to leave Kai at home, so people also didn’t have a visible reminder of my deafness in the form of a 50lb Standard Poodle wearing a vest that states “Deaf Handler”.
However, how hard is it to make sure that you face me when you’re talking to me?
It started with the triage nurse showing me where I needed to wait. She walked off in front of me, far too fast for me to keep up, talking about what was going to happen.
I literally couldn’t keep up and hadn’t a clue what she was saying other than the fact that I knew she was talking. I called out to her, as much as I could in my breathlessness, and she didn’t hear me.
Thankfully other patients did and they stopped her. She slowed down but then didn’t talk to me at all.
I’m not stupid. I’m deaf. I just need you to face me.
An hour or so later, and I’m waiting to be seen still and I start having an allergic reaction. Patients in the waiting room have fruit infused water and iced teas with lemon. These are major allergens for me. So I go up to the desk and ask if I can wait somewhere else. Again, the staff member talks to me while facing away and carrying on with something else. I have to ask her to repeat herself, facing me, several times. It’s a huge imposition apparently for her to take 30 seconds to actually face me!
If I was well, I’d have been angry and advocated for myself and educated her. If I was working, and her teacher, she’d have been given a failing grade and expected to retake my class.
However, today I was a patient and it just hurt.
I didn’t feel that I mattered enough for somebody to take a few extra seconds to face me when talking to me.
To be fair, she did find me somewhere else to wait – that was somewhat safer.
A porter comes to take me for more testing. By now my friend has arrived and is actively advocating for me. I am very blessed. She reminds the porter that I’m deaf and need to see faces to ‘hear’.
The porter comes round to the front of the wheelchair to face me and re-introduces herself and explains what’s happening. Not a trace of frustration with having to repeat herself. In fact, if anything, she was apologetic about not having faced me to begin with. I felt cared for and recognized. I existed! I was a real person! It didn’t take much…
The porter then ensured that she faced me whenever she spoke to me. Not only that but she specifically passed on this information to different staff as she transported me between different places. Everyone that she spoke to then made the effort to make sure that I could see their faces which, in some cases, was quite difficult for them due to the positions I was in for the tests.
She advocated for me, when I wasn’t in a place where I could do so effectively for myself.
The porter was a bright spot in my day. Simply because she took the time to make sure that I could see her face, and to facilitate my interactions with other people. She advocated for me.
In contrast, at one point a technician came to run a test on me and I don’t think in the 5-10 minutes that it took that she spoke more than 2 words to me. I can’t be sure, as not once did she actually face me. This was despite the fact that the test was pretty personal and invasive. I literally felt like a lump of meat being man-handled.
I understand that health professionals can’t treat everybody as so they’re a member of their own family. To be that empathetic would cause burn-out and make them poor at their job. However, when did compassion, courtesy and general professionalism disappear?
As part of my job, I often work in medical schools and teach classes on professionalism, ethics and interactions with patients and their families.
Today, I was reminded of how important those classes are. Health professionals need to have objectivity. They need to have arrogance for they literally hold our lives in their hands; and if they aren’t arrogant enough to believe in their abilities and skills then they could never be successful at what they do.
However, there has to be a balance between objectivity and empathy.
I believe that this balance is compassion. It’s being courteous to each other and professional.
It’s remembering that every patient is likely to be scared. To not be at their best. That they’re human. That they need to feel cared for and not like a piece of meat. That while they may cope well when they’re well, by definition if they’re a patient they’re sick and/or scared of being sick.
Sometimes compassion can be seen in the simple, practical things like taking note of the fact that I’m deaf and making sure that I can see you when you’re talking to me.
Sometimes, it’s in the intangible. The way that you deliver information or news. It might be repetitive and boring to you. However, to me this is new. This has implications for me. It makes a difference to my life.
My results today were mixed. They didn’t find the cause of my difficulty breathing but they did find a whole new health problem for me to deal with. This was presented to me very matter of factly and then I was sent home. No time to process the information. No time to ask questions. Just “We can’t find the cause of your breathing issues and by the way, you need to see a new specialist and they’ll be calling you tomorrow with an appointment.”
I’ve worked in health services research for over 20 years. I know that being called for an appointment the next day is not usually a good sign.
I get the fact that I’m complicated; that nothing much is making sense and that that’s frustrating to you – the health professional. You’re used to problem solving and finding solutions. I’m not helping.
What seemed to get forgotten today though was that I’m the one living this. I’m the one having problems breathing. I’m the one that has now had a specialist, my own doctor and a handful of health professionals literally say “We don’t know what’s wrong or how to deal with this” all in the space of 48 hours.
At this point, all they can recommend is to rest, stay isolated and wean off the steroids slowly so that hopefully we can find the problem once the steroids aren’t masking any issues.
That is scary. Steroids have been keeping me alive for the last 6 weeks. Every time I’ve weaned off them I have become worse and had to go back on them. This time we’re doing a much slower wean and hopefully that will help.
In the meantime I have a whole new health problem to research and find out about before tomorrow!
Hopefully, this new specialist will offer compassion, courtesy and professionalism because at this point I am so far passed tired that I simply can’t advocate for myself.
But, then again I shouldn’t have to.