AVMs and Relationships - Has your AVM hurt or hindered your relationship?

Has anyone’s AVM ordeal (the symptomatic period or the recovery period) interfered with anyone’s relationship with their ‘significant other’ (whether it is a boyfriend or girlfriend, ‘casually’ dating, spouse, or partner)? If so, how have you effectively resolved or handled the situation?

Months ago, I had read that it is important to maintain relationships during the recovery process. (I have found that to be true. We all know that losing a relationship with ‘so called’ friends or other ‘black souls’ is often ‘hard’ (to say the least & put it nicely).) Although it sounds ‘selfish’, one DOES need time to ‘get a grasp’ on this (for themselves and for others) and that seems to have a negative impact on others (unintentionally offends &/or ‘alienates’ others, gives them the wrong impression or false assumptions, etc.). Anyone got any tips on how to deal with / handle this struggle? How does one make them understand this (‘the withdrawlness’) is not about them directly; rather, it is more about the time needed to cope with all this (the need to understand, cope with the feelings / emotions, find out how to ‘manage’ this by resolving emotional & physical ‘issues’, etc.)? Any tips (specific phrases - since men and women have their own language- a good example of the different language is the TV commercial where the daughter walks in and informs her parents that she just got accepted to a ‘good’ college and the dad interprets it as her saying ‘rich, expensive college’) on how to get them to ‘get’ (comprehend & fully understand) this aspect?

Although I have no problem (no negative views) on the aspect of people taking the necessary steps to ‘assure’ others on anything/something, I have NEVER been the type of person that can nor would ‘jumps through hoops’ very long to ‘prove’ something to others… and I find it even more so a ‘less tolerable’ task to engage in or endure now that I am recovering from a brain injury.

Case in point:
I dated a guy for a while (before my AVM injury ordeal) whom I ended up really caring about because he has a 'great heart'; however, I have UNINTENTIONALLY hurt him (which GREATLY bothers me) during my recovery period post craniotomy. I have a STRONG 'need to protect' and in my efforts to 'protect' him from being subjected to 'bull crap', etc. and my own 'self perservation' (in regards to 'salvaging' some dignity), I tried keeping him 'at arms length' to shield him from not being subjected to nor having to put up with any unwarranted bull crap 'treatment' from my mom. (I love my mom but my mom is not the 'sweet, cookie baking, nuturing grandmother' type.) Knowing that the people I care about were 'safe' (protected and shielded) allowed me the 'peace' and the ability to focus on recovering. (When I first got out the hospital, I really didn't have the 'energy' to 'shield and protect' anyone. Even now, I find it requires a lot of my unexpendible energy.) My attempt to 'protect' him didn't work, as it gave him the wrong impression & ultimately ended up pushing him away. (The pushing him away part isn't what bothers me, as I'd much rather him be happy and having fun instead of waiting around and having an 'injured' girlfriend; rather, it is the misconception - him viewing this as a personal 'insult' on his behalf - that greatly bothers me.) Even though I've tried to make him understand that it has nothing to do with issues stemming from him, he still takes this (my not seeing him) extremely personable. I feel so 'inadequate' now because of the 'limitations' (AKA: deficits) I have now. My 'withdrawl time' during my recovery is partly due the self consciousness that I have over my 'deficits'; which, in turn, I am trying to salvage my dignity. ('Self perservation' does naturally and automatically kick in; therefore, superseding all other things).

So how does one maintain the relationship while one is recovering? (I know 'communication' is the key to resolving misunderstandings but it is apparent that what I'm saying is being interpretted differently.) What specific things have you done to 'preserve' your relationship?

Well, I haven’t gone through my embo and craniotomy yet, but I do have a Boyfriend and he seems to be taking all this pretty well. He knows I am having a hard time and he listens when I have a melt down or something like that. But I guess in my experience with anything medical related that will ultimately effect your relationship with someone is give them as much information as they are comfortable with. He reads the posts form this site, hears about every Doctor appointment, so he is prepared for whatever happens. This is just my little version, I am sure your situation is much more complex, but I guess I am saying that though you need time to adjust to this new way of being, just try and give him as much info about what you are going through as you can, maybe he can try to understand?

My husband and I had been married for 19 years when I had my bleed/surgeries. He was absolutely amazing during that time. He was at my side nearly 24 hours a day and still managed to make sure our daughters were living with some sense of normalcy for them. I know he was terrified of losing me. Recovery was difficult because he had to help me so much. I couldn’t walk unassisted, couldn’t sit or stand unassisted, couldn’t get up stairs, etc. I felt the same inadequateness that you describe. We’ve just recently had issues with this also and it’s 2 years post op. I get terrified that he will leave me because I’m so different now and I can’t do the things I used to. I felt like he was with me because he felt he had to be. He’s terrified that I will leave him for the same reasons and he felt like I was with him just because I needed him. What we discovered it that our relationship is so much stronger than it ever was. We both have a deeper appreciation for each other and our love is stronger because we were faced with the very real possibility of me dying. This experience changes our lives most definitely but it also changes the lives of those closest to us. I would definitely say communicating with each other about your feelings and fears, etc. is essential in any relationship perhaps more so with our situations. I think we had an advantage in that we’ve been together so long and have been through rough times before. We know each other so well so it is easier for us to recognize when the other is upset by something and we talk about it. Sorry for rambling, hope that helps some.

Since my avm surgery I have lost my fiance and dated a guy who dumped me three weeks later. This sure does a number on your love life (what love life?).

I was single at the time of my AVM discovery and recovery, but I have found a wonderful man who loves me. Although I am ‘recovered’ now I know I will never be the same and I think that it is for the best. He is very understanding when I break down just thinking about what I went through. I had my surgery on Jan 21st of this year so it is still hard for me to grasp what really happened and that is what causes my break outs of major emotion. I hope that love will find you and that love will over look your ‘deficits’ and love you for the strong woman I know you must be! This is not an easy situation and will take a strong person to help you through the emotions and trials that not only come from the now, but the later as well.
Gisele I echo my statement you as well love will come to you and that love can and will be strong for you when you can’t be. Communication is very important, but understanding is equally if not more important.

Thanks Ladies!

I am 51 years old, my avm had a bleed that led to a stroke when I was 49, my husband has been a big help, we have been married almost 21 years and I knew him for 15 years prior to marriage.

As for me, I thought a lot about my two daughters, more so than my husband.

I feel like my husband and I are starting over, he is very nice, but he is in his own words very aloof lol. My speech was affected with the second stroke that I was given when I had embo.
I have always been a serious person to some degree, since I had the srokes and a few years before that, if people did not really get me I stopped dealing with them. I mean anybody. My husband has a tendency not to listen when I talk, I won’t talk to him now if I think he is not listening lol. Before the avm I accepted all of this stuff, I accepted it because I did not care,
but now, I do care, I don’t know why but I do, it seems right now, we will end up with a better relationship.

I did communicate exactly how I felt, I always did, but I think he can hear me better now.
ME ME ME ME first, if you can’t understand that, BYE lol lol lol You better think about yourself after a brain injury!

Let that man come back around if he wants to help you, helping you may be his fun, guess what, I would not worry about his fun lol lol.

People say how lucky I am because my husband has/is helping me.
I say, “please”, he better, I only been married to him for 20 years.
For real, he doesn’t have to help me, but if he wasn’t, he would not be anywhere near me,
so it would not bother me. Remember I’m 51, m perspective may have a lot to do with my age.

I say all that to say, I think that our relationship has changed, but it seems new to me.
We probably needed new lol lol


My husband and I are coming up on our 10th anni and he has been through 3 surgeries (out of 4) with me and that speaks for itself.
My recent surgery in the thalamus has had the most ‘impact’ on our relationship, since my entire left-side has been affected and is numb and I have some unpleasant sensations on the left-side to cope with. Though I walk w/cane, when we are out and about (shopping, visiting family, etc.), we are both aware of my limitations and are adapting to them.
My husband is my best friend and supports me as best as he possibly can. He is a Godsend to me! We try and stay as active as possible and to find as much humor in our lives as we can.
Life for AVMers and CMers and their partners isn’t an easy road, but I consider life w/my husband a Blessing. :slight_smile:

Thank you, Ameenah and Patti! I am so glad you two have wonderful spouses that are very supportive, helpful, and understanding.
Ameenah: LOL (love your ‘matter-of-factness’). I know what you mean about putting ones self first; however, I feel so selfish and guilty in doing so. Wished people would ‘listen’ and do as I ask / state because ‘explaining’ is just too exhausting right now.
Patti: I’m still extremely ‘sensitive’ about my limitations (still ‘emotional’ / ‘cry baby’ / can’t discuss it without breaking down in tears) and I don’t know how to change that. I am thankful for the ‘good’ and even though I know logically I am not at ‘fault’ for this occurrence, I still can not get around / shake the highly emotional part (of sadness, negative emotions, etc.) that the mere thoughts of what this AVM ordeal has done to my life brings me.

Hi Cindy. I had just only started dating my husband when I had my AVM bleed. We went through everything together…good and bad. As with any marriage…we have had our ups and downs. On the 18th anniversary of my bleed …my father-in-law suffered a massive stroke and was pulled off of life support. I held my husband 's hand as we said good-bye to his father that day.

I know you have trouble with vision so I hope you can at least see part of this video…
If you want to talk deficits… this young man has no arms or legs only a flipper and yet he is happy. I would like you to see yourself as an incredible strong beautiful survivor. BTW…I think it’s okay to cry…it’s been 22 years since my AVM bleed and I cry!!!

Thank you, Barbara. So happy that you are here celebrating 22 years post AVM!
Even though I’m very tender-hearted, I’ve always been ‘strong’ and ‘held my own’ that I am uncomfortable with being so ‘vunerable’ and dependable on anyone. I don’t know how to get beyond my feelings of inadequancy (since I have not restored 100% of my pre-AVM ‘abilities’ yet). My feeling of inadequancy is applicable to all relationships in my life. I have two daughters (ages 18 and 17 yrs. old) and I feel so inadequate in being a nuturing mom because I can’t do everything as I use to do. It is my motherly duty to protect and nuture my children and properly attend to their needs, etc. Additionally, my mother is ailing and is a breast cancer survivor who is ‘stubborn’ and doesn’t really put her health first; therefore, I strongly ‘advocate’ for her to ensure her well-being. I need to continue to be her ‘health advocate’, ensuring things are ‘easy’ for & on her, etc. so she is well. Since my AVM ordeal, I haven’t been able to do that for her and that really bothers me greatly. (So sorry to hear your father-in-law passed away.) I successfully ‘held my own’ and took care of other’s needs and wants pre-AVM that now it seems like I’ve become inadequant by ‘dropping the ball(s)’ and I don’t know how to get beyond feeling like a failure. (I know that I’ve really overcame A LOT - relearning almost everything - and I believe people should ‘celebrate’ even the smallest achievements/accomplishments/etc. but, in all honesty, I am scared to celebrate what I have achieved so far. Although I am so thankful for and happy about my ‘achievements’ to date, I guess a part of me doesn’t want to ‘jinx’ any ‘achievements’ and part of me just isn’t finished ‘achieving’/improving yet.) .

Oh Cindy…we all understand the feeling of frustration and inadequacy. At one point my goal was to be able to go to the bathroom by myself. I understand about stubborn parents too. My parents are very elderly and frail and quite often do foolish things such as driving to Dunkin Doughnuts in the middle of an ice storm!

I suspect your daughters want to help you and would not be happy if they thought you were worrying about them now. Perhaps this horrific experience is teaching them to handle something awful and different when it occurs later on in their lives.

You are NOT a failure. In my opinion a failure is a quitter and you do not appear to be that kind of person. I will be sending positive thought and prayers your way!!!

Thank you, Barbara. I absolutely understand that goal. I, too, had to have assistance & supervision for safety in doing anything (restroom, bathing) in the restroom in the very beginning and I greatly missed my privacy time during that time. I greatly appreciate your thoughts and prayers!
I know that other people (people in our lives whom have not experienced an AVM ordeal/incident themselves) do not fully understand what we go through nor know what to do that actually does help us emotionally/mentally; however, I always feel ‘injured’ around everyone (family, friends) who know about my AVM ordeal/incident and that makes me want to not spend time with them. May I ask you what helped you (& others) move beyond your AVM ordeal/incident and got you back into your normal routine/life/treatment?

girl, i know exactly what you mean by this. it’s an irrational “shame” almost of what we have to deal with, yea? my avm ruptured just before middle school and once i began 6th grade, most of my peers ridiculed me for being partially paralyzed. i thus grew up believeing that i was a “freak,” or something of the sort. and now i am VERY protective of my left side, and do my absolute best to hide the condition; especially from guys i am interested in. but i’ve found that the more i open up about the experience, the more drawn to me people become; and with the help of some of the best friends and family i could have, i am slowly beginning to be more open. its still really hard for me to let men see the vulnerable side of me, but anyone that really cares for you will see the amazing strength of you through what you endure. keep being yourself because that has not changed, no matter what you’re physicality is now. and you are beautiful.

Thank you, Elle. Yes, I believe it is an irrational ‘shame’ we have. So sorry you had to endure that! So happy things are getting better for you in this aspect.

Cindy, I’m not sure how I missed this blog before now but…You echo everything that I feel or have felt at some point in this ordeal. The feelings of worthlessness, inadequacy, frustration…all of that. No one knows how we feel except for us! All I can tell you is that we are all fabulous, beautiful people and we are stronger than anyone can possibly imagine. Hang in there and know that I feel your pain!!

Thank you, Trish! I wish you didn’t know this pain, as it is horrible to feel this way about ourself!
Re “we are stronger than anyone can possibly imagine”: Sometimes, I wish I wasn’t so strong :wink: (j/k… well, in all honesty, half joking). I, as well as any other human being, do long for the day (even prior to my AVM ordeal) that I find that CORRECT one & only ‘significant other half’/‘soulmate’ (not just anyone or the ‘wrong one’) so I don’t always have to be so strong and can/will be confident that things will be & are done as they should be. Given this ‘emotional hole’ I’m stuck in presently, I know that I won’t get that anytime soon because I subconsciously won’t allow any ‘non-AVMer’ close enough to ‘drop my guard’, as they can not even begin to understand any of our experiences with our AVM. And that’s ok with me… I understand that is part of me… my personality… my stubbornness. Somehow I will pull myself out of this emotional ‘rut’, no doubt. It is just hellacious in this ‘meantime period’. These feelings really are ‘mind over matter’ and I was hoping to help give specific way(s) (something to tell ourselves to specifically focus on right now, etc.) that would help people to overcome their ‘grief’ in this aspect of recovery.)

Thank you the ifomation was very helpfull