Do you tell people about your condition?

I'm recently diagnosed with an AVM in the brain and I believe it is likely responsible for the headaches and memory problems that I've had recently.

The question is, do I tell my friends, colleagues, family? I've told a couple of friends and they didn't seem to know how to react. One person sort of denied it and said the MRI must be wrong.

Another person basically said that it seemed very serious and then changed the subject and asked me to do her some favors, which seemed kind of inappropriate and made me sad.

A third friend told me not to blame all of my problems on it (the memory and headaches), which seemed also strange to me, being that those are the common symptoms of an AVM.

Being that these reactions from my closest local friends has sort of hurt my feelings and has been generally unhelpful, I wonder if in fact it's better not to tell people at all.

Do others, who don't need to--who don't have very obvious symptoms/effects--- just not tell people? I'm feeling disappointed that I have no one to really talk to about the process. But on the other hand, telling people has made me feel kind of vulnerable and also disappointed and frustrated.

Thanks,
gaahla

Hi, gaahla, many of us have had some frustration at one time or another with reactions of friends and family; particularly, members with brain AVMs have friends who tell them "You look just fine," as if your illness has to be visible or it isn't real.
To avoid some annoyance, you may want to form a Caringbridge site (http://www.caringbridge.org/), where you can update everyone at once about your condition and treatments and give them time to digest the news they are hearing without your having to experience their initial, possibly inappropriate reactions. It's nice not to have to answer the same questions over and over on the phone, and the friends you invite to your site can leave guestbook messages of support that will make you feel better. You will soon see which friends "get it" from the messages they leave, and those are the ones to phone up when you are feeling down.
No one will leave you a message of "non-support" on CaringBridge, though you may be puzzled to see there will be friends and family who will never leave any messages or acknowledge your illness. I greatly prefer their silence to unsupportive feedback, though. For what it's worth, there are a few thousand people here who understand you are dealing with something serious, and we're here for you.

I'm so grateful to have found this site.
And, it's great to know about CaringBridge.
Thanks Dancermom. Your message means a lot.

I am pretty open about my condition. I have been out of work 4 mos. etc. so it is pretty obvious something is going on. Some people need me to explain what an AVM is. I think it is hard for most to really understand what kind of fatigue I have etc. Some people -ie. 1 person I work with is pretty unempathetic and I distance myself because she says things that upset me. I get the feeling she thinks I am faking it so I pretty much try to avoid her. But most people are helpful, caring and supportive.

hi gaahla, that kind of reactions are normal, most people don't understand, even doctors, and because they can't see they think it is not as serious as you describe. I have many friends that still tell me that there can't be any connection between your spine and deterioration of your other organs. this site is great because we all suffer silently, at least we know what the sufferers are going through.

Hi,I think you should tell your family and friends, by the way ,nice to meet ya,my name is Caroline, I found out about my brain avm when I turned 39 and im 45 now, I had radiation and halo for the avm and the radiation did nothing,((but)) I have seen radiation work so well on others and even have seen the raditaion get rid of an avm completly, my avm is 24ccin size nowit has grown, I just had a massive bleed this past christmas a week before christmas and was flown to the nearest hosptal where I spent a month there and had open brain surgery ,had a shuntplaced in my brain that runs to my stomach in case i bleed again. The only signs I ever had were ,was bad headaches and one seisure, I am going in on the 4th of april for gluing of this avm and three days later removal theonly concern is the location is in the speech area of my brain and hes hoping when he lifts the avm there will beno more bleeds. im in Gods hands,so I feel great!!and I also have a super doctor and family. Not crazy about another surgery just after a massive bleed but I want this avm out!! and God gave me the best doctor to do the job,dont be scared to tell your friends and family,see I showed up for work like it was a normal day at work and everything changed,I lost my job ,have shunts running in my head and body about to have another surgery,but im thankful to god for bringing me a terrific doctor, Five years ago when I had the gamma radiation. my doctor said it could not be removed ever. and now they are about to do it on the 9th:) im so blessed that god and my family have found him before another bleed. I will be praying for you,you never know with avm's. always have them checked,ok,That was my think,Ididnt do it like i should,make sure for the proper tests no matter what. God bless you and talk soon ,Caroline Himes

I found out about mine after a brain injury from an accident. I felt the same way that you are
Feeling. I am open about my avm now, most people act like they could care less "so you only get bad headaches"
Or you “see black spots all the time??” "Why did you forget that"
Not even family ask “how do you feel” or is everything ok, if you look ok, then you must be ok.
I think you should share your story with who you want to and if they don’t like it or treat you different, then life is too short
To pay them any attention!! this is a great site for support!! good luck…

I guess I'm pretty much the only one on the site who can say this- I have not told ANYONE news of my avm. Only my parents, and doctors know. Because of personal reasons, my parents and I have made the decision to keep this completely secret from everyone- including my siblings (I still live at home, as I am only 20,) my grandparents, and even my closest of friends. At first I had an extremely hard time keeping it quiet. While I do not have any extreme outward symptoms, I have disappeared to the hospital twice, each for 3-5 day periods, and it was extremely difficult keeping everyone clueless as to mmy whereabouts. It's pretty tough at times keeping my emotional and physical feelings to myself. I don't want to scare my parents more than necessary so I tend not to mention if anything bothers me, unless it is unbearable. This means my daily headaches, difficulty articulating at times, on and off numbness (like what I felt by my bleeed,) nightmares, and constant worries, must all be kept to myself.
Enter this support group. You have all come to the rescue. Had I not found this site, this experience would be nearly unbearable. I must thank each and every one of you for being my support team. Gaahla, I think you too will find this support team to make the world of a difference to you throughout your experience with this newly recognized part of you in your brain.
-Birdie

Hi Gaahla
In fact, I met my best friend because she shared with me about her AVM. I am a Christian and I woke up one morning with her name Jeanette on my mind. I knew about her as I am in the same ministry as she but I didn't really know her. I got her work tel number and called he. Asked her if something was wrong because her name was written on my mind. She kind of broke down and told me that she had just been diagnosed with an AVM on the brain and that she hadn't told anyone not ever her husband. Well it jsut so happens that I too have an AVM (internal off my left Iliac artery) and had been having procedures for years. I got in the car and she left work and we just talked for about an hour or so. I urged her to share with friends and family even if they might not be as responsivle as she would like. We are on this site because we know that others we are close to might night be able to answer questions or understand what we are going thru. Also to share things like this. It has been over 4 years since I met Jeanette and we are best buds. Don't close off your fears and let them bind up inside; you just might be blessed because you don't. Prayers being sent up for you..Leslie M.

gaahla when i first found out that i had one i told only my sister my partner and that was it, they supported me so i was confident to tell some more people. i told my father and he has just denied it and one of my oldest friends has said to me you can't be ill you don't look ill, theres nothing wrong with you. everyone will take it differently and it has helped me to discover who my real friends are because they are supportive and not judgmental about our condition and i believe this will happen in your case your true frends will not judge or pass judgement they will help you and listen to you when you need help have confidence because not many people know about the condition we have

Please continue to go to ur dr. They can usually help. Especially with headaches and pain. I’m so sorry for everything u r going through also. I am here if u ever need anything also. U don’t even know me and in two messages have really saved me from my medicines I go tomorrow. I hope this crazy dude on my shoulder quits telling me to freak out. Laugh out loud. Mess r that dude. Love u sweety and we r very close. So someday we should meet. That would be the best !!! Love Jen

Weird and I tell everyone. I think they think something’s wrong with me so before they can think something else I tell them yeah I sexy ass jerk is from a stroke. Fool. Laugh out loud. It’s how you feel. Yea ur family and friends and co workers. Close ones anyway should know for support and what if something happens. They don’t know what to tell drs. I would. Don’t yell it like I do. I’m joking I don’t but sure want to. Love Jen

U need to tell them how bad an AVM is. This isn’t made up. This is very rare and ends lives. Phyically and emotionally.

I cant tell you what to do,it truly comes from you but if you read the stories from everyone here, you see that its not something you just keep to yourself,I found out five years ago,yet!!! I have suffered for many years with terrible headaches and one seizure and three months ago a major brain bleed,This is not something you should keep to yourself,but thats just me, im 45 and in five yeras of finding out , i had seizures and a massive bleed, flown to a hospital and had a months stay,doctor said 80% dont make it, I have a shunt now that runs from my head to my stomach,that will stay for life plus cords that run in my head to my stomach,they are there for my next bleed ,if ever,God willing I willnot ever!!!!!!,I only had terrible headaches and never talked much about my avm,not to anyone,from time to time I would have a mri,but my doctor said my avm looked ok,guess I didnt have the correct tests, I dont know,now in just a week they are going back in and removing my avm,thank you lord!! not crazy about brain surgery ,but I dont want another bleed and this avm has gotten a bit larger,so,what im saying is,take care of you,be aware of this thing,its a mess these avm'I will pray for you,never be scared to talk to someone about it,cause you can educate them. God bless you and take care of you ok,,Caroline

Thanks for reaching out, Melanie. Well wishes to you.
~gaahla

Hi HopefulPat,

I'm glad to hear that you're getting support at this time. Well wishes to you. (and ya, got to avoid some people, it's just, better for everyone--isn't it ;)

~gaahla

Hi Caroline,

Thanks for sharing your story. I wish you all the luck on your next procedure--glad to hear you have a wonderful doctor! I will think about your advice. So far, telling people has been a drag & not helpful....but, who knows what the future holds. Many wonderful things I'm sure.

~gaahla

Rebecca,

Thanks, ya, I think you're right. Life is too short to be upset by people reacting stupidly. So far no one has really been acting as I wish they would...I don't know what that means exactly but def not telling me it's bullshit ;)

Maybe I'll just tell people I have a condition that gives me headaches. Seems like a good middle ground. I'll think about that. Thank you for sharing your experience.

Good luck to you too!!
~gaahla

Thanks Birdie.

I'm glad you get so much from this group. Though, sorry to hear how much of your condition you are bearing alone in RL. I suppose we all have to do what we have to do though and you have your reasons. Keep in touch.
You're right, this group is a beacon in the dark.
We're all in this together.
~gaahla

Leslie,

Thanks for sharing your story of friendship. It's lovely that you found each other in this strange but, perhaps fated, way.

Some friends really get it--that's a true treasure.
I wish you both well on your journeys....
Take care,
~gaahla