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Tag: Chronic condition

suicide survey…

suicide survey…

Standing Up to POTS (an organization for which I serve on the Board) is partnering with counselors and suicide prevention specialists to tackle the issue of suicide risk in chronically ill populations.  We need patients with invisible illnesses (any, not just POTS) to complete a survey so we can develop better screening tools to identify the risk of suicide in patients with chronic illnesses. The survey is completely anonymous and will not collect any personal information from you. At this…

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stop comparing every illness to cancer…

stop comparing every illness to cancer…

I expect this post will be wildly unpopular, but I am going to say it anyway. Stop comparing every illness to cancer. The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as every newly diagnosed chronic illness…

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administrative updates…

administrative updates…

Hi friends, I’d like to tell you that the title for this post is some deep metaphor for the wisdom I’m about to bestow, but it’s actually very literal. I made some updates to this blog, and they were administrative in nature. How boooooooring. Formerly, my blog was hosted by WordPress.com, which allows only minor changes. So, I decided to upgrade and self-host a WordPress.org blog. If you read this through an email, please navigate on over to www.dysautonomiac.com and let…

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when bad doctors happen to good people…

when bad doctors happen to good people…

I feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the…

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finding the right words…

finding the right words…

I came across a couple of articles I wanted to share, as I thought they might be beneficial for us all. Anyone who has friends who suffer from a chronic illness has likely struggled with finding the right words to say to their friend. Certainly we all want to express our sympathy and understanding and want to be careful not to inadvertently hurt our friends’ feelings while trying to express our sympathy. I have many friends with chronic illnesses, both…

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