Stories of Support
Posted , 11 users are following.
Dear Group,
As some of you may know, I am working on a research paper about this condition that we all share. I am interested in the support systems that you all have found helpful throughout your journey with this disease.
Can you tell me some about the people in your lives that you have found particularly helpful? What is it about how they behaved or treated you that you found helpful?
Thank you for sharing always,
emily
1 like, 18 replies
rajan88795 EmilyandBilly
Posted
Hello all , how do you guys have been doing now .
i am diagnosed with GS and having right side pain mild though. and not able to gain any weight since many years
assist me with diet
Copper-enjoyer EmilyandBilly
Edited
Some random therapist said that i maybe have gilbert's syndrome. After my 3 years of struggle. And she didnt tell me to do DNA test. I had to to everything by myself. There was no support, just ignorance. I was considered as hypochondriac by doctors and they prescribed me phenobarbital (to kill me as fast as possible) and of course they said that i need "to move more, less computer and eat healthy". I was 18 years old by the way, the country is Russia
caitlyn14978 EmilyandBilly
Posted
My body has always seemed to need a default of 11 hours sleep without an alarm, even as a child. This can be interpreted as laziness and I couldn't understand why I was this way, so having those around me now understand that there is a scientific reason behind it has felt good.
I have never had pain under the ribs become so noticeable as recently. I even experience aching around the upper right back, when previously it was only short stabbing pains in the front. I even use a hot water bottle sometimes. Does anyone else experience this? Wondering if I should mention it to my GP but am acutely aware of the cycle of worry/stress/anxiety and GS symptoms.