I mentioned to my husband one day that if I ever wrote a book about my health challenges, I would call it “You Didn’t Ask.” It was a self-indulgent comment given it privately lashed out at those I didn’t think fully supported me during a difficult time in my life.  I took it very personal at times when, in truth, I was complicit.

It is also true, however, that this (dis)ease is very sadly misunderstood which is why this community is so vital. We understand the isolation and loneliness; we get how desperate the endeavor is to literally be responsible to save your own life.

I lived daily for years with the terrifying reality that my life had irrevocably changed. Rarely I was clear enough to research my condition, or look for another doctor. Most days I experienced profound confusion, weakness, disabling fatigue, widespread pain, significant memory loss, fevers.

I didn’t want to die, but I didn’t want to live either. It was a perpetual limbo where I was quite literally stuck with myself day in and day out, and stuck also with the mental gymnastics that go along with pain and suffering and trying to figure it all out. Once a rock-climber and avid runner, I now lay in bed most days.

I did not share these things with my family and friends, rather I spoke of doctor visits and possible diagnoses. I did not share my vulnerability. With the exception of only a couple people, I chose to be alone with my suffering. Why?

I was prideful. I didn’t want to be judged. Is she really sick? Oh great, are we talking about this again?


But it is more than that. An imprint from my past suggested the role of martyr, misunderstood and mistreated. I chose anger. Instead of asking for what I needed, I chose to suffer privately. On some very deep level, maybe I didn’t feel deserving of love and support. It was therefore easier to be angry than to show vulnerability and risk rejection.

I did the greatest soul work of my life during those months when it was the hardest. I learned in order to believe I deserved to be loved, I had to first cultivate a different relationship with myself. I had to show myself the same consideration and tenderness that I wished from others. However, this insight didn’t come until after the fact.

This was not something that I was consciously working on, which is to say that in your darkest hours, you might also be unconsciously moving mountains.

I believe with every cell in my body that your thoughts and language perpetuate patterns of un-wellness. I am not a victim. I am a warrior. My spiritual coach at the time helped me to relearn a new language (Thanks Kelli!). See what happens when you replace the word “issues” with “challenges.” Feel the difference? Words have power; your cells are listening!

I learned to ask for support. I could be vulnerable. I chose language that was empowering. But perhaps most powerful of all was that in learning to care for myself, I was even better at looking outside of myself so that I could, even on a bad day, remember that I was not the only person suffering.

Hold that this is true, Warrior Friends ~

  • You deserve to be supported. You deserve to be loved.
  • Love yourself. Forgive yourself. Forgive others.
  • Ask for what you need.
  • Be mindful of the language you are using. Your cells are listening!
  • Be open to the soul work that comes with extraordinary challenges.
  • When it is very, very dark, you may still be moving toward lightness. You may unconsciously be doing the greatest soul-work of your life and you may very well be moving toward wellness. With every cell in your body, allow that truth and very real possibility to be with you today and always.

Keep the faith friends. Healing is possible.

Love, Stacy


Words, Well Scent

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