It has been difficult at school for me with friends because they just don’t understand what I have been through and how life threatening it was. They just call me a princess and how sensitive I am about it. It just makes me want to slap them. Like okay you go through a stroke, a brain AVM haemorrhage and a 9 hour brain AVM resection. It just annoys me so much like don’t say I am a princess about what I have been through because I was lucky enough to survive. Like if these people went through what I went through, they would definitely not have been able to handle the amount of pain that is carried before and after the experience
School is generally not an understanding place. As you know, it is more civilized in the sixth form than in earlier years but even then, people are not very mature.
Almost all of the adults round here will tell you that understanding of hidden disabilities and mental health stuff it doesn’t improve remarkably when you get to be among adults, though I think it varies by the culture of those around you. I had a very understanding crowd round me (with the exception of the boss’s boss who had obviously googled “AVMs” and told me they were rare and most people lived their lives without a rupture, unaware of the AVM, which is probably true but the odds must change once it is making its presence felt).
In general, people don’t understand a hidden condition of any kind: you’re very much judged on what they can see and the challenges of mental health or anxiety understanding have been there for a long time.
People do talk about these things a lot more than ever before and in the work culture that I have inhabited in recent years, to express mental health concerns was not necessarily something that would mark you out for “no career” but I have to say it would have dulled my career if I had spoken out many years ago, at the start of me working. I never let on to work colleagues about some of my mental health challenges while I still thought I had career prospects! I am sure it is safer to do so today but I’m also sure it will vary from boss to boss even more so than company to company.
All of our experiences with our AVMs is different. I understand what you say about the pain before and after. In my case (mine hasn’t ruptured) I fell, mentally, off my pedestal as soon as I had a formal diagnosis. I had taken my health for granted for 50 years, never broken a bone, had a minor procedure or two in hospital (but I’m talking really minor) and all of a sudden, I was faced with the risk of a stroke. It hits you mentally. I had some physical issues from it (it was making a noise in my ear and it started to make me really quite dizzy: not nauseous but definitely dizzy) but it was the mental impact of the possibility of a significant haemorrhagic stroke that I think knocked me sideways most. It was that which the boss could see (I told him very plainly, too) but it was also what his boss could see.
Sometimes, I think people are trying to help when they say “But you look ok” but we all understand that it isn’t the physical stuff necessarily, it’s often the mental impact of it all.
So… we understand. We’ve been through the same stuff. And honestly, school is not a place to expect a mature response. It should get better as you spend more time with more experienced adults but honestly, there’s an amount of education to be done in society as a whole that disability and illness are often invisible and the struggles that people are dealing with are not as easily fixed as putting an arm in a sling.
Hope something here helps.
Sorry @BuckyBarnesWife, but others who haven’t been here often do not understand and some never will. I’ve often said sometimes I think it would have been easier if I’d lost a limb, at least then people would be able to see my impairment.
Trying to get others to comprehend where we are at is impossible (I know, I’ve tried to educate others) but when even some medicos don’t understand, trying to get others to see the reality of it all can be a really painful experience. Often people see all types of injuries as the same, what I call the ‘Broken Bone Theory’ ie you break your leg, you go to hospital and they plaster it up. 6-8 weeks later it’s all healed and things go back to normal. But we’re not talking about a broken bone, we’re talking about the brain and the healing of the brain matter is completely different. With the brain often 6-8 MONTHS and things may still not be back to anything like normal.
For me personally my last neurosurgery (No.6) was back in '13 and still today I’m on a seesaw of symptoms and the mental side of things is exhausting. Some days I am OK, some days I’m overwhelmed with symptoms and no 2 days are ever the same. Someone one day said to me ‘Ohh it can’t be THAT bad…’ and I told them to ‘lay on the floor and I’d boot you in the side of the head then you can tell me…’ they were offended by my response, but nowhere near as offended as I.
We know this because we’ve lived it too. So, come talk to us.
Merl from the Modsupport Team
I do want to be a little encouraging that the experience of those of us over a certain age is one thing; I am encouraged that mental health is talked about openly a lot more than it was and I take this as a sign of the improvement of society over time. There are other things going on in the world that are undoing a lot of the past at the moment but I’m optimistic that understanding each other is something that should improve over your lifetime.
That’s exactly how I feel. Nobody but my family understands because they’re with me all the time. I have not wanted to see my friends because this happened at school & two of my friends were there to witness it, & they too do not understand. They think I’m the silly, goofy friend they used to know. It’s hard to discern when you’re supposed to be that silly, goofy friend of theirs when they don’t understand you. I feel like I kinda resent them a little, how can your life be so perfect & mine is taken back 2 years type of thing.
I want to remind you, you’re not sensitive, you’ve just gone through something traumatic & you’re coping.
You are not alone,
I just realized it was 6 years today that I went into the hospital after my AVM rupture, struck me as I was contemplating this post. I have learnt a lot in the intervening 6 years, a lot about the misunderstanding of the unseen injury or illness. I learned that it was nicer to just have someone sit beside me, then to tell me they get tired to. Someone to understand that I need time alone, but still love being with people. That maybe I have a little struggle to find words, but I might have something to say.
I come form an age where you didn’t talk about mental health, but we are much better with a long way to go. That is why this group is so valuable for me, in addition to being open, we understand a lot more than most, but more importantly likely know we don’t understand at the same time. I don’t know if that makes sense to anyone, I understand more by understanding that I might not understand even though I possible had similar experiences. That just confused me!
All that to say, you have our support, most people will never have an inkling what you have been through, nor what you are feeling. You will meet people who realize that at times you just need someone to sit beside you, you’ll know they are there for you. Hopefully we can do that virtually. Take Care, John.
I’d expected the closest ones to me to understand - but, it’s definitely not how it works for me. . . It really showed me the true colors of people around me.
I feel like my son really gets it the most - and, he’s only 10
It is what it is - I have no idea why or how I was given the strength to drag myself out of the mud
But, still pulling pretty strong - last week’s ER visit really reassured me of what I am physically capable of. I should be starting school back up next spring or fall - so, yeah
Not everyone gets it as easy as I do - but, I’m doing what I still can when I still can
@mike_az_21 you’re not getting it easy, mate. Honestly, you’re fighting your way through this as much as the best of us.
Not just this piece but all of your post is one of the most thoughtful I’ve ever seen you post @JD12
I’m not the survivor per say, but I’m the surviving spouse of a survivor, rather we are survivors together. One of the things that helped me the most and continues is to really come to the realization - or to understand that people don’t understand. Sometimes they are doing the best they can to respond as they think best (and often no matter how they respond - it’s not right in my eyes). I learned to brush it off and just realize that it’s impossible for them to know what my husband or I have gone through or are currently going through. They’ve never walked in our shoes, so how could they??? So I try not to take it personally, but as almost a disability on their part in their understanding! (Sometimes easier said than done.) People wonder why I don’t do this or that with my husband who is for the most part bed ridden. I can only do what I think is best for him and for me (I have to be well to care for him) - and I can’t please everyone or stress about what they think. I don’t get mad at them, though. I just chalk it up to their lacking in understanding. I doubt they are trying to hurt me. Most have good intentions. So I take it with a grain of salt. Not worth losing friendships over. On the other hand - maybe have a good talk with them. Share your heart. Talking goes a long way in struggling relationships…they may be glad that you told them their comments actually hurt.
This is very true. Because your injury is on the inside it’s not apparent like a missing limb or something.
You can end up feeling very much “alone”. I did. It gets better.
Reach out to me here if you need to talk more about this
Hi, I haven’t been through as much as you this far and my diagnosis of an AVM took such a toll on my mental health it shocked me. If you look deep into your friendships there is a friend that will understand and help you get through this. I was that friend to several of my friends that experienced health issues. Stay strong.
I had a ruptured AVM 3 months after proton treatment. All this happened 2003 and after brain surgery and a stroke I stayed in the hospital for 2 1/2 months. I was in a medically induced coma for 6 weeks before I woke up. I couldn’t walk at first or understand what had happened. I am very thankful that I can do almost everything I did before the rupture. I feel God was with me every step of the way!
. “…A disability on their part…” A good way of understanding it.
I completely understand. People don’t realize how life-altering this experience is. When I went back to school at age 11, my mom and I had to even fight the teachers and principals to prove that I needed extra support. I lost a couple friends that year, but my bestie stayed by me. The school saw me getting good grades, but they didn’t see me crying at night because I was so exhausted from the extra work I had to put in. I remember in high school telling the principal that I was fed up with school. He said, “Well, look at me, I’ve been in schools for the last fifty years, and I’m still going.” My response: “But not with a brain injury.”
Wishing you all the best. You’re not alone.
I ended up with brain radiation necrosis and became permanently disabled. After nearly two years of home schooling i wanted to try going back to school for year 11. My old friends made fun of me so i quit school. Im 42 now; i never forgot and will never fogive.
It’s great to hear from you. I believe strongly that we often use the word friends more freely than we should! A few times in my life I have discovered who my friends are, and who my acquaintances are…Take Care, John.
I have no friends really. Just the people here. None of my school acquaintances or my families understand my disability.
I agree with you about our group here, while most of us will never meet, I feel like I know so many. I know folks here will lend an ear, offer a perspective, share an experience, give some encouragement and do so from the heart. It helps me a lot, and I have leaned on people here many times. John.
College was the worst! I had my avm resection 3 months before attending college. I made friends but they didn’t understand my keepra-rage, extreme exhaustion or my inability to drink alcohol like everyone else. Things have gotten better but i notice people don’t invite me to the fun stuff because i don’t drink.