Comment

Comment by Birdie on March 23, 2012 at 12:11am

Sonjaj34,
Wow- although your huband's and my situations are completely different, we are both stopping ourselves from sharing news of our condiditons for similar reasons- I too, cannot tell my family and friends since I am scared the story of my situation will get twisted and will have a horrible, or "devastating" as you so clearly described it, to my future. How do you and your husband deal with the news? Do you ever feel that you are bursting with the need to share your situation with others? There are times that I feel so suffocated!

Comment by Sonjaj34 on March 20, 2012 at 2:46pm

In my husband's line of work we can't tell anyone about his condition; not even our friends for fear it might get out. It is something we would like to share but it is so misunderstood that if we told co-workers or friends they could twist the story around and it could have devastating results for my husband's career.

Comment by Grace O'Brien on January 15, 2012 at 9:20am

Hi, I held on to my AVM news for a bit as well, but I was glad when I finally told everyone. It helped alot to have the support of everyone who loves and cares about you. For me it gave me strength. They would be very upset at me if I didn't tell them, we are family and look out for each other. I don't know your family, therefore the choice is yours, but from my experience I would want them to know. It definately made me feel better.

Comment by Nay on January 12, 2012 at 5:31pm

Hey,
I was diagnosed with my avm on feb 14,2011. For awhile only my parents and a few close friends knew about it. I didn't want to tell my other family members since I didn't know what i wanted to do. On March 13th i will have my first embo march 20th my second embo and march 21st is the day of my suregery (my sisters bday :/)
I decided to family tell my family this coming weekend. I figured that although we arent as close that they still love and care for me and would want to support me. For a long time I couldn't bare with telling ppl about my avm..i just didnt want to deal with it, explain it and get the pitty party.....as my date of tx,sx gets closer i feel like i need my family around...it was really hard excepting this myself..im sure my family will have the same feeling but at least i'll have support. Im scared of reactions and sometimes i dont even want to talk about my avm..its a constant reminder and burden that something could take my life any min ....
As for dealing with my feelings...i guess i was in complete denial that i needed anyone....i felt like i could do it on my own but in reality i can't.

Comment by Ben Morrell on May 5, 2011 at 8:06pm

  Hi Birdie.  I kepy mine a secret from my mother (and some of my friends) for 16 yrs.  Because I knew she would only worry.   I finally told her about it when I decided to have it treated.  

  How did I deal with my feelings?  It took me a few months but, I came to terms of what could happen if it were to rupture.  Basically,  I learned to accept death.  By me doing that, I could then embrace and enjoy my life.  It may sound ironic but, that's what works for me.

Comment by Jessica Ables on May 5, 2011 at 12:33pm

Birdie,

I can't imagine how I would have gotten through this entire ordeal and still deal with it if I had to hide it from my family. You'll be in my prayers. The entire healing process has been better because I do have the support of friends and family. At first none of them knew what an AVM even was but theyve all read up on it and know it pretty well. I won't ask about the personal reason, but I pray that you keep those close who you can depend on.

Comment by Birdie on May 4, 2011 at 9:45pm

Thank you, Joy and DM, for your good wishes. I will try to update you as I go along with the rest of my treatment. I am currently scheduled for a gamma knife treatment on May 11, and the current plan is to inform my siblings (who live at home with me, as they are 13 and 17 years old) that I will be having a day-long procedure, but it will not be overnight. They still do not know what all of my apointments and procedures are about, or what the problem is. All  we have told them is that it is not cancer, thank g-d, and I should be cured hopefully very soon. I hope this reassures them so that they do not have to worry too much.

Comment by DM H Sydney on May 4, 2011 at 8:33pm

I agree with Joy, I don't think I could cope with having to hide this from friends and family. I had to tell my son even though he is only 11 nearly 12 because he needs to understand why I always have headaches, dizzy, blurry vision etc. But with him being so young it was very hard. I showed him different sites and also let him have a look on here as well. My sister does not agree with the amount of information that I gave him but he seems to be coping alright so far. I will see how he is well I am in hospital. 

That would be a very hard thing to stick to as so much of your day to day things will have bearing on your AVM.

I feel for you, keep strong and take care

 

DM

Comment by Joy on May 4, 2011 at 7:40pm

The only way we got thru the experience was WITH family and friend support. I cannot imagine hiding something like this. And I don't think it would have been fair to my son.  He needed the love and care that they provided.  I always say that the only thing that helps when you are going thru something like this is knowing others care.

I'm so sorry you have to go thru all of this at 19.  It must be so difficult.