I am 19 years old and come from a very close-knit family. I was diagnosed with a brain AVM in December of 2010, and have been treating it ever since. (2 embolizations and hospital stays, a few angiograms, countless doctors visits, and soon a gamma-knife procedure).You can read the sequence of events on my page. As of now, only my parents know about what has been goin on. We have not told any family members or friends- not even my grandparents or my siblings! Our decision is based on a personal reason.
My question to you, my fellow AVM survivor, is if you have ever had to hide your condition from anyone you held dear, and how did you deal with your feelings?
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.
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
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.
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.
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.
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.
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.
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.
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!
Hi Birdie, I just joined this site yesterday. My sister in law just had craniotomy on Tuesday after having a seizure on Saturday about 2000 miles away from her home at her daughters college graduation.
Her husband and children have decided not to tell very many people about this and I don't know why. I was posting hang in there type of things on their facebook page and immediately my husband got a call from my brother in law asking me to take down any postings...they don't want everyone to know... I seriously don't understand this at all. If you have this diagnosis I would want everyone around you to know... that way paramedics can respond appropriately. How do you know that you won't be with someone who knows your condition if you should start having symptoms? I am advising my brother in law to go to this web site to read what other people are going through. I think it would be really good for you to try to talk to people on this web site so I congratulate you on trying...Hopefullly you will find some great friends. What city do you live in?