Lucie's Approach to Living with an Affliction

Lucie chose to live in a "healing bubble" inside of which she believed that she could get better, that miracles do happen to a small number of people (so why not her...) that occasionally doctors are wrong in their diagnosis, etc. She sought out 'alternative health practitioners' who were able to help enormously in lessening the impact of her symptoms.  She took workshops dealing with the body's subtle energies.
And she was a realist. She did not deny what was happening to her body.  In fact, she had no problem describing her symptoms of the moment, as factual information.  What she did not want was to be labelled, or to have an end state projected on her based on what happens to other people with the same disease.  Part of the broader reality is that there are charlatans out there, and some medical personnel not able to support her 'healing bubble' world view, and she did her best to avoid both.
This was not easy!  To slowly lose your health and still believe you can get better is a challenge.  So she had 'dark nights of the soul' along the way, and bouts of feeling depressed or crying.  She accepted that, too.  The best way to shift her mood was ACTION.  Do something: wash the dishes or pet the cat or do internet research or play inspiring music.
She did a lot of sharing about her process, including a public presentation on how to face your fears when something really, really, bad is looming on the horizon.  This could be useful to anyone facing a difficult situation.