When you're not alone you're not alone

[Guest ScottS]

The current issue of the New York Times has an interesting and thoughtful article titled "Five Things I Wish I’d Known Before My Chronic Illness". In it the author, Tessa Miller, tells of her experiences with Crohn's, an as yet not curable autoimmune disease that attacks the digestive system. Reading it I couldn't help but draw parallels between Crohn's and our very own and lovable (not to forget, also as yet not curable) affliction, POTS.

Following is a pair of brief excerpts: “Having a chronic illness is a series of continuous ups and downs where some things that work for a while won’t and so on,” said Alicia Aiello, president of Girls With Guts, an organization that empowers women with IBD and ostomies. “Be open to this change.”

"Chronically ill people research their diseases ad nauseam. They try more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure."

Sound familiar? 

The link: https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html?fallback=0&recId=1HSpH4n2Th3pNNM12G8b3FlnLwc&locked=0&geoContinent=NA&geoRegion=UT&recAlloc=top_conversion&geoCountry=US&blockId=most-popular&imp_id=408874374&action=click&module=trending&pgtype=Article&region=Footer

[JimL]

Remember CFS/Fibromyalgia? It was considered psychosomatic at one time. POTS was probably considered hysteria by some, anxiety by others. I have to wonder if doctors ever consider their confirmation bias and motivated reasoning and the consequences of such. The more I get into this, the more disappointed I am in the medical profession. I think part of it are biases and motivated reasoning and part of it is a business model centered on metrics and not patients. I have to wonder if there is a list we get on that labels us and it's like a permanent record that one can't escape. Just look at the woman in one the DI's videos that went to 41 doctors before getting good help. It's not like we live in a 3rd world backwater. I am having a hard time with this. What's worse, dealing with the symptoms or no one believing you. It's like I have some magical disorder that 99.9999% of people never heard of and therefore it's made up. Oh fast heart rate, it must be nerves. Dentists aren't a problem for me, at least not yet. 

[Guest ScottS]

Among the many ways whatever it is I have (POTS being a handy and convenient catch all) affects me are both Chronic Fatigue and Fibromyalgia. So yes, I remember them. The reason why I linked to the NY Times article isn't to jump on the "let's bash doctors" bandwagon. (Been there/done that, nothing good ever came for me from either.) Rather, I just thought it would be good for someone/anyone struggling/in the midst of an especially aggressive episode or attack/getting better after a prolonged series of episodes or attacks to catch a glimpse of another person sailing by and, all the while, living a different but parallel life.

[Pistol]

What I have experienced about doctors and POTS is that it requires them to see the WHOLE patient - not only the PART they specialize in. Often it is cardiologists who see POTS sufferers first due to the tachycardia - but there is no ACTUAL abnormal arrhythmia and no abnormality of the heart itself - so they claim it is not their area, that we need to go see someone else. Normally they will send you back to your PCP with a report that there is nothing structurally wrong with your heart. Same with Neurologists - there is nothing wrong with your brain and your exam is normal. If only they knew that the parts are just that: A PART of something called the body of a human being and that there is actual interaction going on within that body! And that if the computer of a car gets messed up then SOMETHING will stop working - and the another thing and so on … but you can keep changing the oil or replace the air filter or spark plugs etc - it will not change the fact that the car does not drive because the computer is broke, not any one part. The docs have to change the way they approach medicine and many docs are not able - or willing - to realize that. 

[chimeraskeep]

Thank you for sharing that article, Scott...  So many very true statements!  Highly enjoyed!

God Bless all.  🤗

[JimL]

1 hour ago, Pistol said:

What I have experienced about doctors and POTS is that it requires them to see the WHOLE patient - not only the PART they specialize in. Often it is cardiologists who see POTS sufferers first due to the tachycardia - but there is no ACTUAL abnormal arrhythmia and no abnormality of the heart itself - so they claim it is not their area, that we need to go see someone else. Normally they will send you back to your PCP with a report that there is nothing structurally wrong with your heart. Same with Neurologists - there is nothing wrong with your brain and your exam is normal. If only they knew that the parts are just that: A PART of something called the body of a human being and that there is actual interaction going on within that body! And that if the computer of a car gets messed up then SOMETHING will stop working - and the another thing and so on … but you can keep changing the oil or replace the air filter or spark plugs etc - it will not change the fact that the car does not drive because the computer is broke, not any one part. The docs have to change the way they approach medicine and many docs are not able - or willing - to realize that. 

William Osler said that if you listen to the patient they will give the diagnosis. This was 100 years ago. 

[JimL]

12 hours ago, ScottS said:

Among the many ways whatever it is I have (POTS being a handy and convenient catch all) affects me are both Chronic Fatigue and Fibromyalgia. So yes, I remember them. The reason why I linked to the NY Times article isn't to jump on the "let's bash doctors" bandwagon. (Been there/done that, nothing good ever came for me from either.) Rather, I just thought it would be good for someone/anyone struggling/in the midst of an especially aggressive episode or attack/getting better after a prolonged series of episodes or attacks to catch a glimpse of another person sailing by and, all the while, living a different but parallel life.

Sorry if I've bashed doctors. I had very good ones in NY and good in Iowa, but since moving to AZ, not as good. I don't know if it's chance, geography or just a change in the medical field over the years, but I wish I had the doctors I had in NY or even Iowa. Just better at diagnosis in general.