For people with chronic illnesses, what do you think is the worst part of your illness?

Question

I'm a writer working on a book to help people who are dealing with chronic illnesses (an illness that you have for a long period of time and that is debilitating to such a degree that it has changed your lifestyle).

If you'd like to give me more data that I can use as research for this book, I have an online survey at http://www.quia.com/sv/86904.html... that I'd appreciate people taking as well as responding to this question.

I want to write a book, from a Christian perspective, that meets the needs of those with chronic illnesses. I myself have had Chronic Fatigue Syndrome for 6 years, my mother just had a mild stroke and my father has been going through chemo for cancer. I see a great need for such a book out there and I'd like to be the one to provide it. The more information I get from people who struggle with these kinds of illnesses, the more I can tailor my book to their needs.

Thank you. (Yes, I posted this once before, but am trying it again to get more responses.)

Thank you to all who responded. The answers were VERY helpful! Wish I could give them all a 10...well, except for one. But we all know who that was. It's just a good reminder of something we all know, the ignorant are everywhere. :o)

Answer 1

for me it's just that it's chronic. I've had fibromyalgia since 2000 and to this day most even some of my family don' t think it's real. The lack of understanding that am in pain that there r days I can barely function, that I fall sometimes even having to crawl to the bathroom. The stereotype that goes with it that it's in our head. I could go on and on. Good luck with your book will be praying for u...

Answer 2

The most frustrating thing for me is getting pain medication.Unless you are literally doubled over in pain,they think you are a drug seeker.It is not right to judge other peoples pain.I do go to a pain specialist and take Soma 4 times a day and Salicylic 3 times a day.But like the other day I really hurt my back bad.I went to the ER and thank God th doctor on duty knew me and gave me a shot of Nubian and told me to increase my Soma to 2 tabs 4 times a day.The next day it was no better,so I went to the local clinic and again I was glad the doctor on duty that day knew me and my pain.But had these 2 doctors were not there to treat me,I would of been told to take some Motrin and take it easy.It is so frustrating b/c the few bad eggs trying to get pain meds that don't need them,messes it up for those of us with true pain.

Answer 3

Good idea!! Your book should discuss about chronic diseases brought on by vices (Reiter's syndrome) or additions (alcoholism leading to liver cirrhosis) or infections (Tuberculosis). Many chronic diseases have unknown causes (RA, Lupus, Brohn's disease, Cancer, etc).
You may want to discuss that sometimes the treatment is worse than the disease (chemotherapy). Fibromyalgia, Chronic Fatigue Syndrome may be auto-immune diseases related.
You may want to dedidate a chapter in the effect of praying and hope on illness recovery or the power of touch on the healing process!. Best wishes!!

Answer 4

Chapter 1: Chronic fatigue syndrome is not real.

Chapter 2: Get a real diagnosis as to what your problem is.

Chapter 3: See Chapter 1

There, I saved you all the trouble!

Answer 5

My experience with cancer has shown me that the worst part is the waiting game. Pathology takes a week to come back sometimes with a report. Or the doctor takes 15 minutes to come back into the examination room with your results. It has made me numb. My anxiety died. I feel nothing not happiness, etc. anymore.

Answer 6

The moment you really realize your ill not when the doc tells you but when it really sinks in! Thats what I'm dealing with. -Cancer

Answer 7

waiting to see if it will come back

I have Non-Hodgkins Lymphoma, and they say it always comes back

Answer 8

THE DOUBT LETHARGY UNKNOWING COMPENSATION FOR ASSOCIATION FRUSTRATION FEAR ANXIETY DESPERATION