Medical Anxiety

I know I am not the only one with absurd mental anxiety since my AVM, but sometimes compared to my peers I feel so. I recently had a semi exposure with a dangerous infectious disease. Until I got in touch with my doctor, my mind was going absolutely crazy. I am seeking out therapy since it can be pretty debilitating.

The anxiety, especially when it gets bad, can make me become so deflated that I can’t really be an advocate for my own health. I feel totally out of control. I think this is because when I had my bleed, I really was out of control, with my family making all the decisions.

I’m hopeful that therapy will allow me to regain some control of this aspect of my life and am in the meantime interested what the experience of others been.


You are definitely not the only one - my anxiety can offer me a hell of a lot of options (all worse than the previous thought) with my AVM and new symptoms.

Good luck with therapy! Really pleased that you can access this as a resource!


Big, HUGE, MASSIVE +1 to Writerchick for this one.
Post surgery, every ache, every pain and I was questioning myself ‘Is this it…?’ I was walking on egg shells, having the fear that with every step something was going to break. I needed to talk to a professional and I sought out a psychologist. Through this I (semi) learnt to accept and put somethings in place to be able to cope and manage a little better.

I know, for me, if I let my mind takeover, it can take me down some awful dark places. I also know that it can be extremely difficult to crawl back out of those dark holes, so I try to avoid them. If I can feel myself headed that way, I know, I need to make some changes to divert my mind. The psych helped me to identify my triggers, identify the signs and make a plan to change my mindset, to break that cycle. I found when the only voice I hear is my own, those same incessant thoughts kept reoccurring. I didn’t have the ‘answer/solution’ in the first place, so replaying it again and again and ag… only increased my stresses again and again and ag… I was an absolute mess. I needed help.

The first step is to identify there’s an issue. You’ve already done that. The second step is to accept you need help and then find that help. This is where I stumbled. I had what I call the ‘Caveman mentality’ ie I man, I strong, I can beat this myself. Only I couldn’t and the more I physically pushed myself to overcome it all, the more my body and mind pushed back. I was driving myself into the ground (it was actually my wife who identified this) I was telling myself I was building stamina by pushing my limits, when in reality I was frying myself.

Seeing a psych was the best thing I could have done. She assisted me in accepting that ‘this’ is my new reality. I can push my limits, but there is always a consequence for doing so (usually in agony). I try (not always successfully) to work within my limits. Those limits can vary wildly, so managing that can be a challenge, but I try to learn what works for me. I put somethings in place to reduce my ‘What if’ stresses what if ‘X’ happens? What if ‘Y’ happens. I made a will. Set a medical power of attorney. Made sure my insurances were covered. Cleared my debts. Detailed my wishes and why. This was not so much for me, but to prevent tension if the worst was to happen. In very basic terms, if there was something I could do to try and reduce the stresses. If it was within my control, it was up to me. I couldn’t control the medical, so I had to hand that to the medicos. The rest was up to me.

Some people may tell you they know all about it. It’s a lie. Unless they’ve lived it themselves, been in the same position, they really have no clue. I say this because for many years prior to my own situation I taught people with disabilities and thought I knew all about disability. What I knew was all of the theory or what I call ‘Book Knowledge’. Living it…OMG… it’s given me a whole new education I wouldn’t wish on anybody. But here we are. We learn to manage the best way we can.

We know because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team


@Stuartt I think esp for us who have had rare medical issues and speaking for myself my younger sister two years after I my strokes and AVM got necrotizing fasciitis and almost died then got MRSA or something 10x and almost died a few times it is normal .
She has PTSD and waits too long to go the dr when her skin acts up and myself and my mom have ptsd from drs making mistakes with her.
I was able to get her therapy by phone before it was a normal thing in 2013.
I have a cousin who recently retired as a SF police officer and also has PTSD .
What I have learned is you never get rid of it you learn tools to deal with it.
I guess for myself cause of my background in finance I try to get the most info and research on the subject and find the best dr in area for the matter. I am fortunate that I live in the Bay Area and have access to Stanford, UCSF, & UC Davis. I will also travel to see a dr .
Not all therapists are trained for medical issues I meant one who literally said what I was describing to her was making her nauseous…so I clearly stopped seeing her.
Usually a pain dr can suggest a good one.

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Hi Stuartt, That’s great that you’re seeking out therapy. I think that’s the most positive thing you can do now. You’ve had a big trauma that I can relate to (I had an AVM bleed.) The thing about trauma is that it’s really not possible to process it while you’re still in it.
The therapy will give you short term coping strategies and set you up for long term future success. You seem smart and resilient so I feel you’ll succeed in processing the trauma/loss of control.
By the way, this forum is spectacular for sharing fears, anxiety and being out of control. It may even be just as good as therapy for now. So, it’s important for you to keep sharing deeply. It’s truly an investment.
Best wishes, Greg


Thanks for everyone’s word. I knew writing this post that most everyone on the forum has probably experienced some form of anxiety since their AVM. It seems anxiety and depression has a way of making your heart think you are the only one. I really appreciate all the support.


Yes, it is a complete shock to the system. I’ve not had a bleed and yet the worry about having one feels like it is as bad.

How it hits you varies completely from person to person but there are definitely some friends here who have been hit by this thing just as hard as you. It isn’t really helpful for me to name them but they are definitely here and I’m sure some will talk about it soon.

I think letting this stuff out is sooooo much more helpful than bottling it up, so wherever you feel in trouble it is a good thing to share with someone and if we are the ones best placed to recognise how you are and just walk with you a few yards along the way, so be it. It’s part of what we are here for.

Keep believing because you are just as worth it as everyone else.

Best wishes,



Please try not to worry. I think a certain amount of anxiety is entirely normal and shows you’re human. I’m sure most professionals would rather put your mind at rest.