The moment when my doctor said to me that I didn't have Schwannomatosis but NF2. I had a genetic test. He was standing in front of me, and I was sitting. I had no idea about what was coming. I was excepting that they didn't find any marker, because I am the first of my family having SWN.

I was sitting but after each sentence I was moving in direction lying in my chair. Then I stand up and went out of the room. I called my husband and my daughter, and walked to the metro station. I was like : a body is walking, it's your body, but your mind is not here anymore, not thinking anymore, only my body was living. I was like dead. I bought something to eat, and I was outside of me, thinking, take your money, don't forget your stuff, go out the shop. Like a computer giving me the way out to live.

I don't think NF itself weighs me down or affects my daily life. I never had visible neurofibromas until I had my children. I am discouraged you can see more and more of them. I do feel self-conscious at times. However, I am very grateful it does not affect my physical abilities. I really hope that my son has no complications from NF. The unknown is what is the biggest worry.

Thanks so much for the responses and being so open to this exercise! Looking forward to seeing what others post. Please feel free to reply!

A few years ago I woke up with about 90% of my hearing gone in my right ear ( I was already complete deaf in left ear). I make it a priority to be grateful often, even in the tiniest of things because I have experienced what a difference it makes in my life when things get rough. But this morning, I couldn't do that. I went straight to negative thoughts and catastrophic thoughts about this being the end of my hearing and not knowing how to "do life" this way, etc.  For about six days I couldn't hear and it was a very lonely experience. I cried a lot. I was irritable. I was angry and wanted to lash out at people and things that had done nothing to me. I was put on a steroid treatment for ten days and most of my hearing in that ear returned.  Over the next few months I experienced this three more times and now have significant loss of hearing on the right side permanently. Each time it got a little easier but also each time I went straight to the negative thoughts, isolating myself, being angry and irritable. I didn't like that at all! I also noted how other people responded to me during those times. It makes the future when I will eventually be fully deaf appear to be pretty dismal and lonely. No one in my life really can understand what it feels like to lose hearing. It is definitely frustrating. 

@mghnfw18 I am sorry to hear this. I work in marketing with audiologists. I've seen situations like yours all too often. Helping to educate those in your life on hearing loss is one of the best ways to adapt and cope together. I hope you can continue to find light throughout this situation. 

My great uncle, grandfather, and mother, had a significant display of NF 1 superficial bumps. At age four I realized that I also would have bumps and would look like my mother and grandfather. I remember how everyone would stare at my mother and grandfather and how I hated my mother to be around my friends and come to my school. I have four brothers who were and are considered attractive men. I knew and was stared at when in the locker room,  at the beach, during the summer, etc. I hated my life from that moment going forward,  My life changed at four and I struggle in my recovery ever since. 

Thank you everyone who has responded! If you haven't posted yet, please remember to before starting session two! Good luck this week!

Hi everybody,

I think if you are living in the states, your are asleep or try to be. I'm living in south of France and I'm enjoying my morning coffee on my terrasse in the sun.

I'm happy to know that we are some SWN patients in this program. It was a huge help when I could met patients like me in France and had the feeling, we speak the same langage. I discover the langage of pain, which is international.

Best wishes. 

Nice to meet you "28".  I was asleep but now am enjoying my tea and gratitude journal prior to getting ready for my day.  I agree with you that meeting people with similar struggles is helpful. Other people in my life try to understand but the really have little understanding in the way someone who has the disorder does.  Have a wonderful rest of your day. - "18" 

@mghnfw27 Thank you so much.  Actually educating others makes me feel a sense of purpose for the hearing loss. Its strange really but I am a "silver lining" kind of a person so I try to find the good in all situations, even those that appear to be the worst.