Chronic Illness?

Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.

― Jamie Weisman, As I Live and Breathe: Notes of a Patient-Doctor

Chronic Illness or no Chronic Illness?

Even though some would debate the legitimacy of my "chronic illness" status and I myself, still have a hard time accepting that limiting role...the above quote hits home.  I read it and I felt I had to put it down here.  In the last few years I have lost many to the same "chronic illness" I supposedly do not have even though I was the first to present with symptoms...the same symptoms the others who have been diagnosed   (and are still living) have now. 

I made a connecting link, a long time ago. with my family history...a legitimate one, an intelligent one...but I got shut down again and again and again.  I was already labeled as test seeker...crazy...a liar... so any possibilities  I had to share for ruling out purposes  were heard only  as the ravings of a hypochondriac. More people died or nearly died. In order to save the rest of my family, I felt I had to step back with my own presentation of illness.  I couldn't be the spokesperson.  They wouldn't be taken seriously if I was. I had to tell those who could help them that I was "fine" when I wasn't. 

The loss of those I love and my own helplessness in helping them has caused me great suffering over the years....so great I suppress it as I attempt to suppress this entire situation.  I am obviously not so successful at keeping it down below the surface.  There is so much suffering perceived because of this...all it takes is a quote I happen upon to bring it all out to the surface.

The Experience of suffering

My subjective experience  of dealing with  physical symptoms has also been one of "suffering."   I don't feel well and my life has become so limited because I do not feel well. What I and other people may describe as "terrible events to be feared" have happened in my life and they continue to happen.  At the same time I experience this I am forced to deal with medical judgement and assumption that gets in the way of proper diagnosing as well as great financial and social loss. 

It could be said then that some  terrible events occurred changing my life forever and I am not being validated for it.  I cannot speak about it without  a fear of shaming.  I go without  the support and validation many take for granted.  This impacts my subjective experience of being ill...keeping me in the lower end of the continuum.  I feel sick but I do not have a right to express it, let alone get help for it.  It is like I am not allowed to be sick but I am not allowed to get better.  So I am stuck!

But I Survive!

But I survive!  Everyday I pick myself up and I keep going.  I focus on what I can do and I do that.  I focus on the people who know the legitimacy of my condition and I seek help from them.  I talk to them.  I ignore the rest.  I adapt!  I go on with whatever compromises I have been forced to make and whatever losses I have been forced to endure. I know the simple truth.... that I must go on living.  So I do.

I am grateful for the lesson.  All is well!

But the fact is that I wouldn't have won even a single Tour de France without the lesson of illness. What it teaches is this: pain is temporary. Quitting lasts forever.

Lance Armstrong