Posted in Advocate

NHBPM –Day 1: Titles of my future book.

Today’s blogging topic involves picking a few working titles for a book and a synopsis you are writing about your life, community, condition, or health activism.

1.         Having it all – When RA and fibromyalgia came into my life, I was busy trying to climb the career ladder. I wanted it all: a family and a thriving career. I thought that I could have it but when chronic illness came into my life, I realized that I really didn’t have it all, I was just faking it.  I had spent so much time creating an image for the outside world to see.  Chronic illness forced me to look deep inside myself and see what I really wanted out of life.  For the first time, I saw that the person I was wasn’t someone I was proud of. I worked in the legal field on the defense side.  The only people I was helping were those with the deep pockets and I wasn’t really proud of that.  Chronic illness taught me that happiness outweighed the amount of money you brought home because happiness could give you peace of mind and my job wasn’t giving me that.   Advocating for others not only gave me peace of mind but it also showed me that having it all wasn’t about making money, it was about helping others and making them happy.

2.         Rules for Living with Chronic Illness – Being sick and being chronically ill are two different things. Sick people call off work to recuperate but if chronically ill people could call off if they didn’t feel well, they would never go into work.  People with chronic illness go into work despite the pain, the fatigue, and the constant feeling of being unwell.  For sick people, there are no rules for being sick except staying in bed and calling off from work.  For chronically ill people, there are many rules and for each person, those rules are different.  It is the process to finding out what those rules that is similar.

3.         Life happens when you are busy making other plans: A little over four years ago, I had been planning on taking my law school entrance exam so that I could go to law school. I had also just started a new job after moving back to my hometown and getting married. After making arrangements to take the preparation course, I found out I was pregnant so I decided that law school would be put on hold until the baby was at least two years old. I also decided that after the baby was about six months, I could take my law school entrance exam and then look into law schools that I would be able to start in a year or so. I had it all planned out but my plans changed when chronic illness came into my life.  One of the most important things I learned from that experience is that we should never assume that life will work out the way we plan to. It has become one of the rules I live by.  Once I accepted that my plans would change, new doors opened up for me because I learned to make wiser decisions and it kept me prepared for an unknown future.  The thing about life is that it is always unknown.  With chronic illness plans will change and once you accept that you can go with the flow.

If were writing a book about yourself, what would the title book and what would it be about?

This post was written as part of NHBPM – 30 health posts in 30 days:


2 thoughts on “NHBPM –Day 1: Titles of my future book.

  1. I came up with titles, but no synopsis-es. I think your book(s) would be extraordinarily helpful to people new to living with RA AND to people who’ve had it awhile but need to learn better coping strategies. Hmmm. Something to think about, eh?

  2. Thank you, Lana for your thought provoking post. The rules for living with chronic illness are something worth further clarification. Many struggle to find their rules. Your writings give them hope. They enlighten me with further thoughts about messages from my patients that I don’t hear clearly or they may not express. As a Family Physician caring for and about hundreds of people with a wide variety of chronic illnesses/diseases, I can never know the full story of what their experience is. Thanks for writing. Blog on!

    A. Patrick Jonas, MD

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