My husband and I are also dealing with trying to decide who to tell about a new diagnosis and in my son's case, the need for surgery. I have a sister who would post everything about it on facebook and would probably take pictures of my son in his hospital bed if she were allowed in my son's room after he has surgery. She did this when my dad had surgery. I have a family that has trouble keeping secrets so I feel like I can tell no one and it is so isolating, but I feel like have have to isolate myself to protect my sanity. My husband agrees that this is best, but it is hard to have no emotional support.
I read about the symptoms of PTSD and I think I have it from watching family members who are closest to me going through difficult, painful medical issues and knowing that it is not over and will get worse before there is any chance of things getting better. Yesterday we had to listen to a surgeon explain the chances of surgical complications, including the possibility of death or more disability, for a surgery my son will have to have. My son and I already had white coat anxiety and we have found nothing that helps us keep our blood pressure down when we have to go to doctor appointments and listen to bad news. My son did tell me the night before that he needed to stay up almost all night and distract himself by reading and playing video games so that he wouldn't get much sleep and would be so tired that he could remain emotionally flat.
I don't think I can even tell the people at the church I used to go to or the religious homeschool group we belonged to for a while because I can't take hypocritical church members suggesting that we must be more sinful than they are for this to be happening to us or that we are more sinful because we have anxiety about issues we are dealing with.
My son lived with a misdiagnosis for years. He felt the judgment by family and people in our town who thought his problems were caused by too much time reading and doing things on the computer instead of playing sports and that his handwriting was sloppy because I didn't make him practice enough. We were judged by family members who thought my son just needed to exercise more. In my gut I knew that my son tried very hard to improve his writing and he was doing the best he could do. We had trouble getting his PCPs to refer him to specialists. He had a physical reason for his dysgraphia and we could not get a proper diagnosis until he was 14.
I try to consider my son's feeling about people knowing. Right now I know that he does not want people, including family, talking about him. We live in a sports obsessed small town where they expect all kids to be the same. They are bullied or made fun of if they are not, so in our case it is best to not tell anyone, but if people were more supportive here and my son felt this support instead of their judgment, I would want to educate people about my son's gifts and disabilities.
