The POTScast

This is a good podcast and it’s very informative hence going to my doctor in vegas leads to just saying you are fine, when my body doesn’t say so and so as my blood work. I have very high Ige, sensitive to foods and I also have anemia. This podcast helps me take the steps on what’s really going on because doctors seem to just brush it off as if they don’t want to help in any way! ❤️

This podcast and the Standing Up to POTS website have been instrumental in my health journey. To this day, I cannot find a medical professional to help with my POTS and EDS. This resource has been invaluable for treating my POTS; from how much salt and I water I should be consuming per day to experimenting with Vitamin D. It also helped me to self-diagnose my venous insufficiency and pursue medical treatment for it (side note: I did have the ablation procedure and I still have POTS, BUT there have been a few slow improvements). All this is to say that, overall, I think both the podcast and the website are invaluable tools. However, having said that, there are a few things that have bothered and continue to bother me - the pathologization of fat and the moralization of food - specifically statements such as, «if you’re not willing to give up y or z, than your x must not be that bad. » It is shocking to hear from such advanced professionals, as well as insensitive and frankly ignorant, especially when so many people with these syndromes struggle with disordered eating due to their chronic illness(es); never mind the culture we live in. I would suggest they take a look into the work of Ragan Chastain, Kate Manne, and Alexis Conason, just to name a few. I also find it quite aggravating, and I can’t imagine I’m the only one, when the guests tell listeners to find a doctor who is willing to work with them or try to work with their current doctor - how unhelpful and how seemingly disconnected to the state in which many listeners are in, particularly when a number of these professionals cannot work with insurance. It is just another reminder that there are doctors out there that can help you, but because you are poor you will never be able to receive their help. Aggravating and demoralizing. Also, a broad misunderstanding of the « mind-body connection » has been demonstrated, but this is not specific to this podcast - it is common across the medical field and crops up in various shapes and sizes. Again, I love the podcast and it is because I love it that I believe these items need to be pointed out.

I absolutely love having a place to get good info about POTS and… importantly… the other conditions that come with it, like MCAS and hEDS… where the people understand, care, and have an upbeat attitude about it. I especially like the contrast of the POTS Practitioners episodes for expertise versus the POTS Diaries episodes for the experiences of patients. The other types of episodes are great also. Thank you to the volunteers making this. It must be a lot of work. I appreciate it hugely. Whenever I’m lying around waiting to feel good again I put on an episode and feel understood.

Thank you for creating this podcast. It makes me feel so much less alone! Our stories are all so similar. Thank you thank you thank you ♥️