I just joined this forum. Not so I can come on here and list my "symptoms" and get reassurance that I'm okay. I think that in an of itself is a symptom of HA and it needs to stop. I don't think I can ever overcome HA if I'm repeating behaviors that only keep me "sick" with HA.
I want to learn how to live with the fact that I can't control what happens to me (or my children because I worry excessively for them too) or that my control is limited and even if I do all the right things with my health, I (and my kids) could still get some kind of disease. I want to learn how to be okay with that and live a happy life in spite of this fact.
I tend to worry about the rare diseases more than the common ones, even though I am more likely to get one of those. And the more rare, horrible and untreatable the disease, the more I worry. Most times I don't have a symptom but just the idea that I have no way to stop it and although it's rare, it DOES happen to people, is enough to send me over the edge with panic. I will sometimes develop "symptoms" just hearing about a disease that I have started to worry about.
I have read about FFI and sFI. There are only 40 families world-wide that have it and it's mostly hereditary. Even more rare, are cases of sFI (sporadic and not hereditary). There are only 24 people world-wide diagnosed. On this planet of 7 BILLION I am actually worried about getting this disease! That is how crazy HA is. 24 out of 7 billion is so rare that it's not even worth my time because it's much MORE possible that I will NEVER get this disease. If we're talking about rates, that means 7,699,999,976 out of 7,000,000,000 do not get this disease. Yet the rate of cancer for women is 1 in 2. 50% of women on this planet will develop some kind of cancer in their lifetime. Yet I don't worry about cancer. I think a lot of the anxiety for me is in the lack of treatment options. The more rare a disease, the less treatment options, zero chance of surviving and dying a horrible death, the more worried I get. But with cancer, lots of people beat it and survive. There is hope. I think that's why rare diseases scare me most. They are death sentences with tremendous suffering.
I can't control these things. I might get some horrible disease and die a horrible death. My children might too which scares me so much. But I literally can't do anything about it. But I also may not get a horrible disease and die a horrible death. I might live to be old and die a peaceful death. Like my grandmother, who died peacefully in her sleep a the ripe age of 89. That could be me too.
The fear of me dying and leaving my children alone in the world also plays into this too. I have a son with challenges who relies on me for everything. I can't die until he's an adult and able to survive on his own. And I have no way to secure that. This scares the hell out of me. But somehow, I need to accept this and be fine with it so that I can live life to the fullest with my children.
I am hoping we can find ways to overcome and I would love to hear your success stories. I'd like to know if there are others who are like me and worry about the rarest diseases and how you cope with that.