At the end of December there was some talk on my Twitter feed (is that the right terminology?) about the concept of ditching a long list of New Year’s resolutions and instead picking one word to focus on for the year. For anyone who is on Twitter, you can search @getoneword or #oneword to read more.
I first heard about the whole one word thing last summer and I thought it was a great idea, picked the word balance, and then basically just forgot about it until a few weeks ago. In trying to decide what my one word for 2015 would be I concluded that picking one word for the entire year was not the best idea for me. On the roller coaster of chronic illness circumstances change so quickly and my priorities in a few months might be totally different than my priorities now. Instead, I decided to pick a word just one month at a time. That said, my one word for January is…
Confession: Lately I have been feeling disillusioned and frustrated with Canadian health care. I have always been so proud of our universal health care system. When I was in grade eleven I actually did a presentation on our father of universal health care Tommy Douglas. But lately? Lately I have been unable to look past the overburdened and overcrowded system with its long wait times.
We’ve all been there. We’ve all waited months for things to get done, but here are a few examples. I was referred for a non-urgent brain MRI in June of 2013 and my appointment was for April or May of 2015 (and then I ended up having it done inpatient last year). When I needed to see my GI after three years the wait time was five months, and that was as a returning patient not even as a new one. I have an appointment with a geneticist later this month that I was referred for in July. I’ve always just accepted that this is the way it works here and not knowing anything different I never really thought much about it.
Until a few weeks ago.
You know how I’ve been talking about mystery symptoms that are awaiting diagnosis? Well, most of those symptoms are related to my autonomic nervous system and while all my doctors agree that there is something wrong with said system, it’s beyond their scope of practice and they don’t know what to do about it. As a result, in December I was referred to a neurologist and last week I was given my appointment date…for June.
That was it. If I was a camel that would have been the straw to send me to the ground. However seeing as I am a human being and not a camel I instead cried. I’m not up on the current wait times for various specialties here, but objectively speaking I’m not even sure if six months for something non-urgent or non-life threatening is that long. Subjectively speaking, though, six months feels like forever. How can I live in this body that is constantly betraying me for another six months?
Side note: I’m very happy to be a human and not a camel in this situation because on top of all my other health issues the last thing I really need right now is a broken back. Of course there are a lot of other reasons I am happy not to be a camel but those reasons really aren’t relevant here.
As I was saying, six months feels like forever. I know that there are people who are worse off than I am also waiting for months to see doctors. And I know that there are people getting in to see specialists sooner because their situations are urgent or life threatening. I know these things, but when you’ve been sick for years it’s really hard not to be selfish. It’s really hard not to think who cares about other patients? I just want to feel better! And remember how I said that long wait times were all I knew? Well now that I’m connected with a lot of other spoonies, most of who live in the States, long wait times are no longer all I know. I know that it’s possible to see a specialist within weeks. And I know that it’s possible to call a specialist on your own to make an appointment, instead of waiting months for them to call you with an appointment that’s still months away.
It’s hard not to be jealous. It’s hard not to be impatient. It’s hard not to feel like I’m trapped in a health care system that sometimes seems more like an impossibly long line-up.
But the thing is, this system also hasn’t let me down. I have endured some really long waits and have had some negative experiences, but I have always been given the care I need. My life has never been at risk because I’ve had to wait. No one likes waiting, but things have always been okay in the end. So why should I think that this is any different?
It’s not. Which is why my word for January is trust.
Trust the system. Trust my doctors. Trust that things will turn out for the best. Trust that something good will come from being patient.
I cannot change my situation, but I can accept it and trust that things will be okay.
So that’s my one word for January. Come February 1st I get to go back to my frustrated, disgruntled, and jealous ways! But in the meantime I will just let it go and trust that everything will work out.
And trust myself to get through it, because no matter the month or the word, that will always be true.