Calm in "The Diagnosis Vortex of Doom"

        Last week, I shared a link to an article by Michelle Auerbach which resonated with a lot of people who are struggling with illnesses which either cannot be, or simply haven't yet been diagnosed, and an adequate treatment program begun.  The fact that so many agreed it was an issue of importance, both in public and in private, has had me thinking about my own situation, and so, here we go again!  Something a little unusual, but hopefully of value to someone, as well as doing right by Ms Auerbach and her article.

        Just as with the author of said article, my story is long and winding, and far, too much for one post.  Mostly I want to give my own perspective on the idea which she termed, diagnosis “limbo.”  I have been in what I've called "the diagnosis vortex of doom" since 2009, and while I'm actually looking forward to my first meeting with a geneticist this month, it was only by a stroke of good fortune that my place on the waiting list brought me through a nearly 2-year wait, because if things had worked out differently, it would have been four years!  Four years of waiting to find out if I have a rare, genetic disease no one I know has ever heard the name, until I came across one doctor in my area who did: a specialist who sent me to a relatively new internist who happens to know quite a bit about the condition and its related issues!

        I'm going to spare you the major list of names and related issues (though I will tag some of the names to the post, for future reference and in case of interest).  Mostly this is about the three things Ms Auerbach gave as her counsel for those struggling to get answers:

1. Trust the universe.
2. Good things come to those who wait.
3. Lastly, don’t be too hard on yourself.

        Allow me to address them from my own perspective, hopefully without detracting from anything she has said, because she said it so beautifully, already.

1. Trust the universe.  This is simply not something many of us are comfortable doing!  Each of us has our own version of this, including but not limited to faith in a higher power of some sort.  I tend to try to remain neutral, here, but I will say that I have noticed that when we are watching, we find patterns and connections, and in responding to them we can affect change.  If we believe that things will work out in their own time, in their own way, they have a way of doing so.  Just as Ms Auerbach mentions, sometimes at the strangest times and/or in the strangest ways, things can unexpectedly line up to allow us to finally come to the place we need to be, just when we need to be there.  

2. Good things come to those who wait.   "Hurry up, universe!  I haven't got all day!"  Patience is also not something which comes easily to many of us!  While it's good to trust the universe, it's also good to remember that in order to be at that place, at that time, we need to keep moving forward.  So don't give up on your journey, because you are worth being your own, best advocate. Keep asking questions, keep looking for answers, and don't give up based on anything anyone else says nor does - even doctors. They are humans, too, and busy ones at that. Sometimes they just don't know what to do, either, but that doesn't mean you need to stop searching.  Be patient, be watching, but be gentle with yourself and those whose help you need in finding those answers.  Sometimes they have to wait in frustration, too.

3. Lastly, don't be too hard on yourself.  When we're sick, tired, in pain, or generally frustrated for long periods, it can be incredibly taxing.  While it's important to keep moving forward and so on, it is also important to keep in mind that as our own, best advocate, we are also the best people to provide us with love, gentleness and care.  So watch that movie; listen to that music; wear the comfy socks; take the time to provide the kind of self-care that our minds and hearts need as much as our bodies do.  We are worth that kind of love, and especially from ourselves.

        My friends, you are important, and so are your answers.  While it can be painfully frustrating trying to navigate the systems and all their pokes, prodding, scanning, running in circles, and whatever else, if you feel that there is something wrong and it needs to be addressed, don't give up on that need.  It may take a while, but it might not only help you, it might help others whom you can influence on the path to your answers, too.  I've managed to introduce a lot of doctors and other people to the issues I face, many of which very few have known before, and that kind of awareness can create a ripple effect, hopefully reducing stigma and creating an easier path for others following in our wake.  We can hope.  Even better, we can trust!

        Better days ahead, my friends!