Recently a friend on facebook posted about her struggles with her own ongoing medical issues. I thought that perhaps by sharing my own story dealing with a condition I've been going through for the last 4 years it might help. I decided to share that here today as I've never really publicly talked about it and I'll be damned if it didn't feel good to share it outside of my usual comfort zone.
My apologies for the more serious subject matter I promise I have more fluffy bunny stuff right around the corner. ;)
Incoming wall of text:
I absolutely understand how you feel.
Physically I can't identify but mentally I think I can. I've struggled with benign heart palpitations since 2009. I have been through every test you can have whether it be MIBI scans, echo's, ECG's, blood tests, flow tests, etc and some more than once. I have had the good fortune to have dealt with a number of the best heart specialists in Edmonton and all of my own research, the opinions of my GP and specialist's, and others continue to confirm that the palpitations were and are in fact benign. But yet every time I have a particularly bad run of palpitations I feel like I get thrown right back to square one.
It's a tough thing when you're sitting around, or jogging, or cooking dinner, or watching a movie, or doing anything at all really to convince yourself that yes, your heart just stopped/fluttered/thunked but you're not immediately going to die. The feelings of helplessness, anxiety, unease, and especially for me the thought that it might "all just be in my head" were totally and utterly foreign and at times completely terrifying. So much so that in the last 4 years I can tell you I've lost count of the number of times I was totally convinced that I was experiencing my last moments and let me tell you, it can really ruin your day. :)
I'd come to believe that we live in a society where internalizing is seen as a positive and externalizing and sharing your thoughts and pursuing resolutions in the medical system are seen as negative. I've learned with the help of Lisa, family, and friends as an "internalizer" that the healthy reality is much, much different. In the beginning it came with receiving proper medical care and diagnosis. It's one thing to say "I need to go to the hospital" but it's totally another to make sure you pursue the medical professionals for a PROPER diagnosis - one that feels right to you based on your symptoms and medical science. This took all kinds of effort and badgering as Dr's like everyone else are just people. While they have more responsibility than some it is important to remember when dealing with getting a diagnosis it is still just a job to them and they sometimes require an enormous amount of encouragement.
Obtaining a diagnosis that fit was a 1.5 year journey involving a ton of stress, bitterness, doubt, and a an unhealthy amount of fear but I got one. I've since spent the better part of 2.5 years struggling with my own anxiety and worrying tendencies "believing" said diagnosis. That to me has always been and will always be the hardest and most difficult part of it all. Though I know and BELIEVE my diagnosis it is very difficult to stay logical when the symptoms "feel" so wrong.
It was honestly not until very recently that I was able to discover and admit that to me these horrible feelings really center around my own issue with relinquishing control. I am a person that likes to feel as if I am 100% in charge of my own existence - it's why I hate flying, riding on public transportation, or otherwise taking part in anything that I feel I don't have the ability to influence the outcome of. In the case of my palpitations I feel all of these terrible things when they occur BECAUSE of the fact that they occur and there is nothing I can do to stop them.
The epiphany for me occurred when I discovered some random fellow PVC sufferer's post on an obscure support forum that I discovered buried in the annals of the internet during a bout of palpitations. Terrified and absolutely feeling doomed I stumbled across a paragraph that really resonated with me and has helped me understand that I cannot - no matter what - let the condition control me. It has helped me remember that during those struggles that the feelings I am having are temporary, that suspending logic and my decision making faculties is not healthy, and most importantly that despite how I might feel at the time progress is always being made. I will never be without these palpitations but I hope one day to be able to accept and get past them.
Sorry - I rambled on a bit but I hope the mental side of my struggle might help you a bit with yours. I've never really externalized it outside of Lisa, who hears about my bullshit all too often but I hope it helps. :)