Monday, 24 November 2014

Confessions of the journey undiagnosed

I have a confession to make, and it’s neither pretty nor complimentary to me. I am out of patience. I confess that on too many mornings I am done with the trying to figure out if my 13 year old is ill, or if he is just 13. I am ‘up to here’ with trying to be patient with a system that has no way of telling me if any of his doctors have ever spoken to one another about my son’s symptoms. I am done with trying to find out if they have even read each other’s reports. I am tired of trying to figure out what departments are overdue to be seen and who needs to be prodded and what reports aren’t in my binder of medical history.

I am done with tying my brain into knots trying to make connections between activity levels and symptoms, signal vs noise, data vs everyday occurrences in a life that is an ongoing science experiment where the outcome measure of success is less pain and better quality of life.

I am out of patience. I am tired of trying to figure it out. I am done with the mental gymnastics of juggling appointments and interpreting information between health care practitioners and school systems and government bureaus. I need a vacation from this life of constant background calculations of ‘if this, then that’.

I am out of patience with myself because there is no other option. I am the one to tie it together, to find the pattern, to find the signal within the noise, to pull the pieces together. I must be the bastion of calm, the repository of memory, of information, of puzzling the pieces together. That is my role. And I can not afford to lose patience.


  1. You are not alone. I'm in the same boat with you. Were trying to stay alive, lost at sea, wondering if we'll ever reach land.

    Everything you state has been the last five years of my life. So much trauma and frustration, seeing my sweet boy suffer and no one knows why...They say, they're waiting for that bomb of an infection...while 'm alone...trying to deactivate it.

  2. Sending all my possible positive thoughts to you and your family. That lost at sea feeling is so hard. I don't know what I'd do if I hadn't found my rare disease community. I take solace in that my son hasn't been medically fragile yet as he gets older he is the one that is demanding the answers and I have none to give him. I want to ease his way and all I have is guess work. I hope you find answers. I hope you find community.

    1. Thank you, as you as well. We as parents are their #1 advocate, and though a struggle, must try to stay strong for them. Best wishes.


  3. We may not be able to relate to your daily struggles but we are there for you, to take a load off, to vent your frustrations and to lose you patience. We love you, I know it's not much to offer but I hope that in some of those tough moments you know that we are there to catch your fall xox


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