It’s a great question and I hope we’ll get some really interesting answers!
For me, I was 50 when I discovered my AVM. I can link you my story when you’re really stuck for something to do but, to condense it, I could hear my AVM. I went to the doc once, then left it, self-diagnosed courtesy of Dr. Google and frightened myself completely with what Google found. It turned out to be true and at the point that my ENT doctor confirmed “AVM”, I fell off my pedestal. Albeit I hadn’t had a bleed, for the first time in my life I worried about my health and properly fell off my pedestal.
Over time, I rationalised it in my mind. Finding this place, with at least as many good stories as there are less good outcomes, and being able to learn about it helped me to understand and rationalise it but I’m clearly quite the “extrovert” so I shared with people here, people at home, people at work, and so on and I came out the other side pretty good. Took a long time to feel ok but today I’m good.
Recently, I had another health scare. This time prostate cancer. Much more common but potentially just as scary. Directly because of observing how I dealt with my AVM, I determined not to panic about it but was able to rationalise that I only needed to worry about it if I actually got a cancer diagnosis. This worked pretty well and I was much less bothered about it than my AVM. (The extrovert me still had to let it out the bag a couple of times, obviously!) This is one of the good things that came from going through my AVM “journey”: I learnt something from it. I didn’t panic.
In terms of my general mental health, I can say that my extrovert behaviour works for me and I do recommend that you find someone, some people or somewhere that you can share how you feel. Here is a perfect place to do so. It’s anonymous, you don’t know me or the others at all, and people here understand the worries you’re going through. It’s even better if you’ve got a good friend who you can talk to. This is where your real friends come in. I’d say this is more difficult as a young person because you’re less likely to have a friend who has gone through difficulties and will understand but it only needs to be someone who can understand a change in outlook, not necessarily someone with an AVM. An older person could be your outlet if you don’t have someone your own age.
Often you’ll find that other people have a hidden condition that you never knew they had and it is only in you breaking the ice with them that they share what they’ve gone through themselves. Men in particular are very reserved about talking about health or worries or mental well-being, so don’t be surprised if you find a friend who has been hiding something for a long time if you get to talk to them about your concerns.
Being here has been good for me. I’d have never met any of the people here, had I got through life without an AVM. I think I’ve learnt stuff here that makes me a more understanding person and I love some of the people here (most of them, tbh) they are GREAT. There are several who I hope I will get to meet one day and shake by the hand or hug.
Time to let others in.
Oh, my cancer biopsy came back clear last week