Perhaps you’ve heard this from family, friends, acquaintances, or coworkers, (that is if you are able to work). Or maybe you’ve progressed to the point where people don’t even ask how you are because they don’t want to deal with your answer. Maybe they don’t believe you, or maybe they don’t know what to say anymore when your reply is, “Yes, I am still sick.” Whatever the case, you are still sick and now possibly alone on a long, boring, painful, stressful, and depressing journey of figuring out what is making you feel so awful and finding a doctor that will help (good luck!). Of course you can’t tell most people about the journey since they:
- Are healthy and won’t understand.
- Want to hear good news and you don’t have any.
- Don’t have the time to listen to the explanation, and simplifying it leads to misunderstanding.
- Won’t really listen to your explanation anyway, so why waste your time?
- Will think you’re whining, in which case they really don’t want to hear about it.
I am not chronically ill, but as you may have read on my website or on the back of my book, I am the sole caregiver of my chronically ill daughter. I have been taking her to doctors for fourteen years now (More than half her life—how sad is that?) and we didn’t get any useful information from doctors until the last year or two – and that was only after my daughter had done her own research and was able to ask the doctors pertinent questions!
It is extremely difficult for me to see my daughter so sick and not be able to fix it. Another upsetting and frustrating part of this experience has been the doctors’ attitudes, as well as the attitudes of family members, friends, and acquaintances. I began writing the book about two years ago as an outlet for my frustrations. It is NOT a memoir and the main character is NOT my daughter. All the characters are fictional, but based on my experiences of caring for, and sharing a life with, a chronically ill person.
Also, I thought a fiction book might help spread information about POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia, more quickly than the few nonfiction books available on the subject. Based on our experiences, most doctors are unaware of the syndrome, or are misinformed about the same. If my daughter could have been diagnosed with POTS fourteen years ago when it first began instead of only two years ago, there are so many doctors and tests she could have avoided. So I hope my book and website will help other chronically ill women avoid years of needless suffering in their lives.
Julie Jacobsen Deck 