Hey I wonder if anyone gets a chronic fever with their cerebral avm? Also do you feel like you get treated differently, as in treated like you are unimportant? Sorry if I’ve asked these before. My but I’ve dizziness now think I’ll relax and lay down. Thankx for posting my pic!!!
Hi Allison! I have a left temporal AVM, and have never had chronic fever and don’t believe I’ve read anywhere about that. We can see if anyone else joins in, and I’ll do some research over the weekend as I’m curious now! In respect to being treated different, I find those of us with invisible injuries, like AVMs, internal things and mental health are to a large degree. If we had a cast on our head most would understand much better! I was able to accept it much better by recognizing this, although still frustrating! This is one of the many great things about this community, folks here understand and its great you’re with us! Take Care, John.
My avm is on the inside yes but for a long time there my left jaw sagged and I
was treated like crap for it. Mostly in school. A few family members treated me bad too. Like I should get plastic surgery asap! The women in my family that is. The men, thank God, could care less. Anyway thanks for listening to my rant.
Alison,
Hi. It sounds like you’ve had a heck of a time with your AVM and to be honest are still having a heck of a time. We do have a number of people with a brain AVM but the effects of each are driven by exactly where in the brain it is having an impact.
Some of the things you describe – for example being treated badly by people in school – is a very common thing. I didn’t have anything related to my AVM showing itself when I was of school age but I can tell you that people pick on others for all sorts of reasons at school. Any slight excuse or “abnormality” is often seized upon by juvenile or somewhat spiteful people, whether having glasses or big ears or a leg brace or an unusual name, that you are definitely not alone there. Quite the opposite, I think.
In the same way, people with visible disabilities or anormalities are often the subject of comments by adults who don’t think too much about the effect of what they are saying. I like to think about such things like adults saying to get plastic surgery that it is ignorance or over optimism behind the comments rather than any cruelty or harm. Again, it’s quite common that people get comments that are inappropriate.
I also understand what you mean about flitting from subject to subject. It isn’t a behaviour that I have but it is likely to be something whereby your AVM is influencing your attention span. In some ways, I expect it makes life more “interesting” and in fact much more challenging than most people. Again, people around you will fail to understand you and may well treat you less considerately.
So I think you’ve got some really difficult things from your AVM and you should be proud of how you deal with it. Most people don’t have the challenges that you do.
However, I hope more people are learning about disabilities and health conditions that others have and that you’ll get more mature responses from people as they learn more. For example, I think Tourette’s syndrome is a badly understood condition by most people. I have watched TV programmes about Tourette’s. When I went to the supermarket some time ago, a chap in front of me was making all sorts of grunts and squeaks and his girlfriend apologised that he had Tourette’s. Apologised? It didn’t feel right to me. I wanted to encourage them both that I understood a little about Tourette’s and actually, I thought it great to meet someone with the condition. But maybe that’s just me being strange!!
TV can be a great educator. Even as I type this, BBC 1 has broadcast an episode of a hospital drama with a patient being told he has HHT with AVMs being part of his condition! Amazing that rare things like HHT are being used in these ways. Slightly less positive that the description of what might be done for the patient was rather dismissive (so far).
It’s great to have you here with us. I hope you can tell us more about how you are (I am expecting it to be really quite an education) and that we can encourage you along the way.
Lots of love,
Richard
Thanks Richard. There is another question that I have about people, specifically the males since you are one. I wonder why males treat me a little better then females? Is it because I am the opposite gender or they feel sorry for me? Any other male can answer this too.
Probably, as you say, because men are more inclined to be generous to women in the same way that women are more inclined to be nice to men, especially if we think the other person is good looking. I have myself down as someone who treats everyone equally but even so, I do find myself using softer tones with ladies, and probably softer still with those I rather like!
I think it is also fair to say that in some circumstances, men compete with other me and women compete with other women. So I’m quite sure anyone might get better treatment off the opposite gender.
Hope that helps.
Very best wishes
Richard