It can be frustrating at times when I am with my children and random people, not even friends, stop me and ask about my AVM. New travels quickly in a small town. They always have a look of panic in their eyes, ask very personal questions and feel compelled to hug me. YES I want to educate the public about AVM's, YES I appreciate their concern, YES I would rather they heard accurate information from me rather than gossip from the CIBC bank teller. However, there is a time and place for everything and it's not at the grocery store check out. I get tired of thinking and talking about my AVM. It's like I am now defined by the AVM and have lost my identity.
So, here is my conflict....
I just returned home from Easter Dinner with my family ~ Aunts, Uncles, Cousins, Grandmother, etc. Not once was my AVM brought up. Not once did anyone ask about my Neurologist appointment last Wednesday. No one asked about the Gamma Ray Surgery that I have choosen to go ahead with in June. No one asked how I was coping or if they could do anything to help. They have never called or asked about what is going on. If anything I feel/felt ignored.
Before I left I gave a package to my Grandmother to read over with easy to understand facts about AVM's and my treatment. She put in on her fridge and told me "I don't know if I need this. I just tell people I don't know whats going on when they ask me."
Why is it that acquantances, my yoga teacher, people I work with and old high school friends are more interested in my well being than my own family? My husband's family calls or texts often to see how we are and if there is anything they can do to help. My mother and father have been amazing but my sister will call, ask about me then interject with a story about herself. My closest friend for the past several years has completely stopped calling me and when I do see her she talks about herself and how much she hates her life.
I thank god everyday for my Husband, three Children, Mom and Dad and a couple of close friends who have been wonderfully supportive. I thank him for my new friends here and the knowledge I don't have to survive this alone.
I like to give people (including family) a benefit of the doubt and think “they don’t ask about my AVM cuz they are afraid to say something stupid or hurt my feelings”, etc. We’ve all experienced saying something and then regretting it for a long time, such as something you might say to someone who’s lost a family member.
I’ve got a little warped sense about friends. I feel blessed that I have some dear friends who would drop everything and come help me out, as I would them. Fair weather friends, or people that pretend to be your friend and then don’t bring anything to the relationship for you, I can and do ignore. Any “friendship” to me that leaves you depleted is not a good friendship to have.
As for family, the communication thing might be a two way street. I might suggest that you draft a short note (email or snail-mail) to your relatives and give them a status report on where you are, what you are planning to have done, and request any support you think you might need. Or let them know that when your needs arise, you will let them know and suggest ways they might help you through this. I’m hopeful that they aren’t asking out of fear that you might not want to talk about it.
Or you might just nurture the close friends you have and keep the stand-offish relatives at arm’s length. My sister has spoken to me all of 15 minutes in the past 10 years. Some of her previous comments to me have been “go to hell” or worse. I would love to have a good relationship with her, but I don’t see it happening in my lifetime. It’s sad for me to say, but I have friends who I treasure, and a sister that is for all purposes, lost to me forever. Sad, way sad. Life is too short to pursue bad relationships. Cherish the good ones and move forward.
Some of your relatives may not be saying anything to you because they are afraid of upsetting you. Why don't you tell your parents how you feel...they could spread the word that you don't mind talking about it. Better yet, e-mail an update of your treatment and what an AVM is to everyone you want to know about it. That's what I did.
What I was not prepared for was the loss of what I thought were "friends". Like you, I get more support from my husband's family than my own. Sure, the first few months, when they (friends and several family members) all thought I was dying, the support was wonderful...everyone was coming to see me, calling, e-mailing. Five years down the road, I'm in a lot worse shape; need them more than ever...and I'm pretty damn lonely.
Sorry to be so depressing. I'd better listen to my on advice and send out an "update" to all of them! :D
When your sick friends disappear, real ones stick around. That goes with family too. I know my case was different but it was the same I had only a few relatives who stuck by me. My hubby and his family. My own well that is another story. Tell them how you feel, but do it now and get it out. That way before surgery you go in with a peaceful mind & heart. huggs and best to you
I have been in the same position you are in a few years ago when I was receiving treatment for my AVM, I lost contact with a lot of my close friends who were just unable to be there for me. I felt distant from my family who cared but didn’t want to acknowledge it because they were just as afraid as I was and did not want to upset me.
A lot of people don’t know how to deal with AVM’s since they aren’t as mainstream as cancer and are something you don’t hear about until you or someone you know are diagnosed with having one. You should let you family know that you aren’t feeling supported and right now you need them to be with you. I know I would have never made it if I didn’t have my family with me. I am sorry about your friends it’s a very hard position for them and during situations like this you find out who your real friends are. You should talk to them and let them know how you feel or you can risk losing them. It’s very hard to recover a relationship with someone who shows no interest in your health in a difficult period like this one.
My best wishes for you and I hope you have a fast and peaceful recovery.