This article in today's New York Times really does a great job in explaining what it's like to live with a chronic illness.
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html?fallback=0&recId=1HOdnvZ4xEIplgkogxTsz1ZCEk5&locked=0&geoContinent=NA&geoRegion=NC&recAlloc=home-desks&geoCountry=US&blockId=home-living-vi&imp_id=974066466&action=click&module=Smarter%20Living&pgtype=Homepage
Regards, Elaine
What I'd like to have known:
#1- You can't rely on doctors to diagnose or treat you.
I agree, Sharon.
AND
#1 a. You cannot depend on your doctor to be honest with you, or aware of everything in his/her field.
b. Do not be surprised if your doctor doesn't BELIEVE your symptoms, and rejects you as unmanageable and depressed, and even a hypochondriac.
c. You may be blamed for whatever conditions you present.
d. Be prepared to fire doctors, be picky. You deserve the best.
e. A major medical center with a teaching hospital may be your best bet for health care.
# 6 Find an on-line support group or two or three. Don't give up 'til you find a home.
Regards, Elaine
I totally agree with all the posts.
It is very hard to find Rheumatologists where I live. Some are quite good, but are lacking in certain areas.
Examples:
- they only see you for 20 minutes
-cannot comprehend our feeling sick all the time or our fatigue
-no physician seems to want the details of our illness
-if you are a complex case, don't even bother to see a private practice Rheumatologist
-"A major medical center with a teaching hospital may be your best bet for health care." I agree, but it is a hit or miss situation. Many are outstanding, some are rude, some are not interested
I talked to the Chief of Rheumatology at a large academic Center. She was well aware of a shortage of Rheumatologists. Anyway, she was super-nice.
Elaine- So true!
vrystaat- my experience as well!
If you have co-existing conditions, doctors will attribute your current complaint/symptoms to a different condition. :(
That was good. Thanks for sharing that with us Elaine!!!!
Nobody understands a chronic disease like the people who have it. Support groups like this are a lifesaver. I learned more on these than from any doctor, that's for sure!!!!
Thanks for the moderators and founders of Sjogrensworld, making support available to us!
Thanks for sharing, I just posted this on my FB page. It's the best I can do because I still work and I fear revealing that I have several AI's. I worry that if I do share people will not hire me or will think I'm not up to a job.