It's amazing to see how social media has helped people you are in need.
Take Crohn's Disease, or IBD in general, for example. I was diagnosed 30 years ago in 1988, but like many, I started having symptoms months before and even took different doctors to figure it out. The doctor that DID figure it out only really knew because he had another patient that was experiencing similar symptoms. I had never heard of Crohn's and neither had my family or friends and you have to remember, this was BEFORE the world wide web was even out yet. You couldnt just go online and look it up. I had to go to the library and research in a book....when I was well enough to get to the library.
Fast forward 30 years and there are web pages, blog pages, vlogs, etc. out there with a ton of information. Facebook, Twitter, Instagram, etc. help others living with the disease connect talk and share experiences. Many great organizations directly involved with IBD and chronic illnesses, ALL with a keystroke. It's great. Though, with all this comes the snake oil salesmen who claim they have THE cure for Crohn's. I hate to tell them but there is no cure until they find the cause. As many of us have many many different symptoms, there is no one "cure all". They still have to find the trigger, that's the key, in my opinion.
I remember being feeling so isolated and alone suffering though the pain and embarrassment of the disease. Got strange looks from people because of the drastic weight loss, having been asked by a stranger once if I had AIDS. Suicide crossed my mind many, many times.
Things I post online, either on this blog or elsewhere, is what MY experience has been. It might not work for others and if it helps....great! If not, well thats great too because then you know what NOT to do..... for you. Many praise certain diets that put them into remission, which again, is great.....for them, but not for me. Juicing for example. I can't do juicing as it goes right through me, but for others, they have no problems. You need to have trial and error t figure it out....for you.
I like to relate it to this...
All of us are riding the "Crohn's Train" heading towards "Cure Town" and each train car is a different symptom of the disease and within that are different levels of severity.
It makes for a very long and tall train filled with some great people willing to help and support one another.
4 comments:
YEAH for your vital perspective!
THANK YOU for your psychic energy!
I love the image of the train. I got diagnosed in 1984, and I too find the changes amazing and sometimes mind-boggling. I too get frustrated by Snakeoil salesmen, but more encouraged by the community. To Cure town!
Well said !
Yes! I was diagnosed in 1989 after stumbling upon an informed pediatric GI at the Cleveland Clinic. Having to give my teachers pamphlets on what my problem was and why I may need to sponataneously leave the classroom was awful. It would have been so nice to just send them all an email with a link ��.
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