It’s still very early for you; I wouldn’t worry about putting it out of your conversations for a while you need the people around you to understand how they can help you get through some of this.
the light-hearted responses are what I still use to this day.
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For a long time I have been a member of a long-term cancer survivor’s community. Many of us are decades out from treatment, and this subject comes up often. There are a couple of aspects to it.
First are medical problems that can cause significant issues, often limiting ones, but are “invisible” to others. I am back 90-95% but I still have balance issues in certain situations, and I still have to work a bit to speak clearly (not helped by Invisalign which is wonderful but which changes my teeth every week or two). I am sure that sometimes people think I’ve been drinking or that I’m just lazy when I avoid certain clean-up tasks at school activities when I know the head motions will be problematic for me. Way back when I was actually undergoing radiation treatments for cancer, a friend of a friend I’d just met thought I had just run a triathalon, because I had magic-marker lines on my neck and chest. I guess they looked a little like numbers. At the time though I could barely walk a block without stopping to rest.
Another issue though is that people really want to be reassured that your scary medical situation is over, that there is a happy ending for your ordeal, that you’ve been “cured”. That’s partly for you and partly for themselves. I feel like I’m living with the sword of Damocles lingering over my neck while I wait for the AVM to scar shut. And while I feel like a miracle has happened to me, the ordeal is far from over. Besides small but annoying physical limitations, the emotional effects are constantly asserting their presence in my mind. I don’t like knowing that I’m just as likely to have another stroke as I was before the treatment, that it’s not over until it’s completely gone and that I won’t know that until I’ve had more invasive tests to demonstrate that.
But others don’t know that. They ask how I’m doing and I’m immediately in a mini-crisis where I feel I have to figure out if they really want to know, or if they just want to be reassured that if something like that happens it can be fixed. (The latter, almost always, lol.)
A few weeks ago I got into a fight with my teenager. He complained that I always was pissed off with him. I’m not, but I realized I might sound that way when I’m frustrated with myself when it is hard to speak clearly. That frustration was coming through in my voice even though I certainly didn’t mean it to. He hadn’t realized it was even still an issue for me, I hadn’t realized it was having that effect.
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So true! I have been very open about my AVM with a lot of people, so I had to start with “what have I told you / how do you know?” For a long time, I’ve said “I’m good” and if they’re really interested, then let on more detail. My experience with friends and colleagues feels that they are interested to know about me but I agree that a lot of people are actually seeking reassurance for themselves, not you and me. Some of it is self-defence; some of it is shallowness.
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Thanks Mike. I do really feel the need for support and my husband has been fabulous.
When I talk to others though, its clear that only a few are really open to what I have to say.
It seems most people are:
A. Too involved with themslves
B. Dont understand
C. Try to be helpful, but dont understand so say something that is very much not helpful
D. Are supportive
Im still working out who to talk to, and luckly have found a few people.
I was at a friends for dinner last night and made a light hearted comment about “the metal plate in my head” and was told i really couldnt use that as an excuse. Sheesh im only nine weeks post. I have a long way to go. Mind you i had to sit through all of their kidney stone conversation
Thanks for listening
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They’ll be nearer “A” than “D” then! It’s best to laugh about it.
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Thank you to everyone who has responded to this thread. I am reading all of your responses and I’m so greatful that we have this network to support each other especially when we don’t always feel so supported. I know that most likely throughout the course of my life that things like this are bound to happen and I’m prepared for that- it’s just another part of recovery.
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Mike5,
I hate what you said, but it was correct. On the inside, it’s good for me to remember that I may not have achieved all my life’s goals, but considering the AVM and surgery, I’ve done pretty good. On the outside, people just don’t want to talk about it and if I bring it up too much, they have stopped talking to me. AVM survivor is a much better place for me to talk about these problems with the hidden surgery.
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Believe me I understand; I had career goals and other things I wanted to try to do with my life before this AVM rupture and the subsequent deficits put a lot of those out of my reach… though I will keep trying for the rest of my life to try to get as much as I can back.
Since it is a hidden injury and people look at you and think you’re fine I just got to the point where I quit explaining my self and I quit referencing the avm and I just moved on the best I could because I was never going to get people to understand what I was going through… instead of being angry all the time I guess I just started ignoring it all together as best I could.
That might not be the best advice but I think everybody needs to find their own way through this sometimes; and I am thankful for this forum so I know I’m not alone in my journey. Stay strong !
Kitty, I WOULD bring it back up to your best friend! TEACH, and you said ‘educate’ her.
If she is your ‘best’ friend, perhaps she should treat you a little more kindly in such a serious matter for you??
Good luck!!!
Lisa A. Stuckel
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I have had people say that to me a lot, too, and it has been nearly twelve years since my bleed. The people closest to me know better, and even I joke sometimes that perhaps I use my memory problems as a cover for other things, but only with people who actually empathize to my side effects. I think you should say something. The people who comment about my memory problems understand when enough is enough, but it probably came with me originally getting emotional when they first said something. I have been lucky that many of the people close to me listen when I talk about my AVM, but sometimes you have to be blunt and make sure people understand what you are going through, because they probably have no clue!
Yours Truly, Julia
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Someone on the cancer long-term survivor group I joined about ten years ago had this thing she would remind us of periodically: “Every person’s worst problem is their own worst problem”. A nurse had told her that when she complained that she had a hard time finding compassion for a friend who complained about a stuffy nose, when she was dealing with serious long term disabilities. She found it useful to remember that her friend had a very different frame of reference.
We all struggled with this issue, with people who “knew” what we’d been through, and with people who didn’t. But it was also an issue on the list itself; some people found it hard to post about relatively mild compaints like a skinny “radiation neck” when others had major problems like second cancers or failing heart valves or constant pain. It took a constant vigilance to make it a truly inclusive community that didn’t devolve into a competition of whose symptoms were ok to talk about.
I have found that mantra to be really helpful in all sorts of interactions. We all have to play it by ear, all the time, and so does everyone else, when it comes to how much to share and when it’s ok to joke and when it’s best to let a misunderstanding slide. We all make mistakes, too.
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Funny story. I was up at the hospital the other day for a refresher course (diabetes) and the young guy sitting next to me struck up a conversation. He asked if I’d ever had an MRI and I said " yes, I’ve had 6 in the last 2 years". Why? he asks and I explained I’d had an AVM that burst and had to have embolization surgery and now had a head full of metal. “WTF!!” he yells. You look normal and don’t sound loony to me!" I guess I take that as a compliment.
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Elisabet,
This is an important point! Well done!
I am always conscious, when I’m having one of my less-coping / less-comfortable days or week or something that I am undoubtedly not badly off, compared with a lot of people here, so when I have a bit of a moan, I have to recognise that in my post. Otherwise, I wouldn’t expect much sympathy… and I’m probably after a bit of sympathy on those occasions.
So, it’s brilliant that you point this out. It can definitely suppress people from participating here if they don’t feel as bad off as others, yet we want to offer support people all the way through the spectrum of health.
Great observation!
Richard
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Could not "
" this comment enough, thankyou for this 
I found it very frustrating when people would purposely avoid confiding in me when they found out about my AVM stuff - as if their challenges are somehow invalidated by mine. If my friend is sad/down - even if its over something that wouldn’t really upset me as much if it were to happen to me - I am able to be mindful that this isn’t about me, it’s about their feelings confiding in me so ofcourse I will be supportive and empathetic.
Not just that but as you say - all struggles are relative. We all have differant pain thresholds, levels of ability to cope, values ect. For example I could look at someone else who may have everything I want in life and yet they might actually be much less happy and satisfied in life than me. I could see someone with worse vision than me and more brain damage and they could equally be much happier and satisfied in life than me.
I hate the idea of someone using me as a life comparison referance point thinking “oh well I feel crappy right now but hey compared to Corrine’s life mine’s not too bad”. My lifes purpose is not to make others feel better (or worse) about their lives as it is not a competition or game.
Will definently be referencing to this in future!
Corrine
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My advice to you would be to bring it back up to her. I’m only 14 but I find bringing what my friends said back up to them helps.
I have been harassed before because of my AVM and It’s symptoms. My advice to you would be to bring it back up.
A little bit related, and an interesting article. I’m part of the Brain Injury Awareness group on facebook and it has some great articles on a wide range of topics. I found this a good read:
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