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 in advance for your help.

These are really great things for me to know. I can really understand what many of you are saying. With my CFS, I get tired of hearing people say, "I'm just sooo tired." Especially when I know they can't possibly be as exhausted as I am.

I'm going to extend it just so I can get more if they are out there. Thank you so much for helping me!

Answer 1

For the fact that it is chronic, that is has effected every part of my life, that my illness is invisible...meaning I look fine on the outside but I am really sick.

I have Lupus and Antiphospholipid Antibody Syndrome (APS) and it is really hard to predict how I am going to feel from day to day. Then there is the side effects to the meds, weekly trips to the hospital for blood tests. Friends who have bailed - well obviously they weren't real friends and the ones who are left still don't get it and really don't want to hear about it and think it must be nice to be on disability. NOT!

I will check out your survey!

Answer 2

My condition isn't quite so serious, but I'd like to give my input. I got salmonella poisoning, and from it I developed Reiter's Syndrome, which causes chronic arthritis. My knee, wrist and one side of my jaw are quite painful, even with medicines, and the doctor tells me it's pretty much going to be like this from here on out.

The worst part about dealing with it is that there is no light at the end of the tunnel. At least if you know you will heal and get better, you have that to look forward to and your outlook on life in general stays pretty sunny. But, I don't have that day to look forward to. I used to be active: hiking, running, biking, and I can't do any of that now and I may never be able to again. And I'm only 27!!!! Some days I'm so depressed about it I can hardly stand it.

The second worst thing is people feeling sorry for me. They see me limping around and they even stare at me! (who raised them to think it was ok to stare?!) And, pity does me no good. It only makes the depression worse. I need people to treat me the same as they would if I were well again.

Edit: Splinter made me think of something else. People think sometimes I fake too. Like, I'm using the pain as a crutch to get out of doing things. It's infuriating.

Answer 3

I read some of the answera given and they are all true.There r many worst things! 4 me it is the fact that i know there is no getting better. I am learning to cope with God all things are possible I cing to His promises because if I do not have that hope then I have no future.For spinter, whart is low lupus and lo rheumatoid I have fibro also please share.

Answer 4

Thanks for asking. I've always had asthma in my life very bad, and now mild lupus and I am bipolar. My entire life changed at 30 and I've spent 16 years dealing with these illnesses that affected my relationships, job, my home. I went to your online survey and responded to your questions there. Hope it helps your study.

Answer 5

the worst is when people look at me and say "but you look fine" when I feel like I have flu, pain all over, extreme tiredness. Diag fibromyalgia, low positive lupus and low positive rheumatoid. Those people make me feel like they believe I am lying and it hurts my feelings.

Answer 6

Okay, I did your survey.

The worst thing for me is the lack of circdian sleep cycle.

Answer 7

THANK YOU IN ADVANCE for your willingness to write such a book - particularly from a Christian perspective!! AND, since you yourself have experienced a Chronic illness, what I'm about to tell you, will resonate with you, I'm sure!

First of all, let me introduce myself to you.

1) I've successfully managed the symptoms of MS for over 45 years.
2) I was an HR Executive for over 30+ years, and combined my professional and personal expertise in creating a website dedicated to assisting folks with "chronic disease symptoms" better document, communicate, corroborate, and manage their symptoms and the resulting impairments to become expert patients; chronic disease self-managers; and, partner with their doctors to practice patient-centered health care.

http://www.disabilitykey.com

I created the website after myself becoming an "Expert Patient; a Chronic Disease Self-Manager (and, just recently became a Chronic Disease Self-Manager Master Trainer, using the process developed at Stanford University); and, have partnered with my doctors to achieve a Patient-Centered Health Care process.

My results included: 1) qualifying for LTD while continuing to work for a year and retain full income; and, 2) qualifying for SSDI the first time around in under 30 days.

After developing my DisabilityKey Workbook and website, I looked for ways to bess "share" my information. In 2004, while working with my loval MS chapter and church, I discovered Genesis 24:3-66 - the profile of Eliezer: "What is necessary to be a true servant of God." This became my "blueprint" for implementing my website.

1) I've combined both my professional and personal expertise and experiences, and dedicated myself to working with people with disabilities worldwide; I've recently added my 500th person to my list of people who have CONTACTED me about assistance that I have helped.


2) My website contains tons of information in 2 blogs, downloadable free articles and self-help ebooklets, and the Disabilitykey Workbook which contains over 100 pages of how to processes and actual forms - blank and completed examples - to assist folks. This workbook is available for a very small price (under $10).

3) If you want me to send you a copy of my actual "plan", please contact me by email, by clicking onto my Yahoo name.

Now, to answer your question: The biggest "loss" for those with chronic diseases, in my humble opinion, is the loss of a person's "control" over their QUALITY OF LIFE.

This loss manifests itself in many ways. All my processes focus on getting the person with a disability to "gain back control over their disease symptom impairments' negative impact on their normal daily activities; and, thereby, attaining the resources needed to better manage their symptoms, leading to a better quality of life for themselves!!"

This sense of control is the key - it cannot be achieved in any way other than by doing the work by the person him/herself.

So, I offer you the information in the bolgs and the downloads of my website: http://www.disabilitykey.com. If you like any of the information, and would like for me to assist you by being a contributor to your book, please let me know.

Finally, a FANTASTIC resource for all people with disabilities is what is called "The Spoon Theory", found at the #1 premier internet linking wwebsite: http://www.butyoudontlooksick.com

(But You Don't Look Sick is often the #1 maddening comment those of us with disabilities face!)

Best of luck!!

Answer 8

i filled out your survey ...good luck with your book

Answer 9

mine was long...if you need anything else please contact me at [e-mail] thanks.