They Don’t Get It

Hi,

I am in total agreement with these posts. My (large) family didn’t want to see me as someone with a syndrome with physical limitations. They expected me to do errands for them and cook huge meals at family gatherings. It upset me a lot that they didn’t notice, but I had to realize that they just didn’t get it. :confused:

The thing about pain is that people cannot see it easily–especially doctors. A patient may look as if they have some vitality and good coloring, but may be very tired and hurt all over. My friends treated me the same way and wanted me to visit them, but they couldn’t get over to see me. One thing about this disease process is that many of your friends drift away and you find out who the true ones really are. It is a tough way to do it, but it happens. At least we pick up a lot of buddies all over the world who are just like us.

The GBS Foundation had a project last year to send out posters to ER rooms across the country telling them how GBS presents and what to do when they notice the symptoms. I just hope the nurses/docs read them.

Take care,