Whether it's a mental condition or a physical condition, finding a group where you feel comfortable and safe is very important. When you find someone who shares the same condition as you, a bond begins to form.
I know for years, I felt like mine was the only family in the world affected by Neurofibromatosis. I almost felt like I had to hide the condition, because I knew if I didn't, I wouldn't be accepted.
Now that I have "come out of the closet" with my NF, I have opened myself up to a whole new world. I have met hundreds and hundreds of other families, who are struggling with the same issues.
I think groups like Facebook, MySpace, NiNG etc, are fabulous for connecting lost souls. People are desperate for that one thing that will link them to another person.
So, if you haven't already, join a group...there are thousands of groups that are already started. Or, you could start your own. I have created THIS GROUP on facebook, and also the NING GROUP - When you make connections with others dealing with the same issues, you feel less alone, or isolated. When a mental or physical condition is diagnosed, it can bring with it, feelings of depression, anger, fear etc...and having a group of people who understand, can make dealing with it, a little easier.
Not only does a support group help YOU deal with YOUR situation, in time, YOUR situation can help someone else. If you asked me 3 yrs ago, where I would be and what I would be doing with my life....It for sure would not include THRIVING with NEUROFIBROMATOSIS! I've come a long way, in accepting my condition. I'm so glad that Thriving with NF has taken off, and touched so many people!
Perhaps you are just finding out about NF, or learning about a new diagnoses in your child....(or yourself) I know, first hand the flood of emotions that come with that. You actually are dealing with a huge trauma. A "loss" of sorts. It's a loss of everything that you wish could be. The death of a dream. A support group can help you reel it back in, and help you hold on to those dreams.
How do you manage this diagnoses? How do you cope? What will my future be like? Well....What I have come to learn, is that I am NOT my diagnoses. My diagnoses, is NOT ME. It will not control me, or shape my future. But, I would not have believed this, without the support of those around me.
It may seem at surface level...that I am all about Neurofibromatosis, with T-shirt sales (fund raising for www.ctf.org), websites and blogs...but that would be wrong. What I am about is helping others see through their diagnoses, to something more....something bigger. Supporting and helping people not just LIVE.....but THRIVE with Neurofibromatosis.