The Patient's Voice

A comment regarding Olivia M.'s contributing article in the past issue of Dysautonomia News
by Ruth D. Saddler

It is discouraging to hear in these more enlightened times that one still feels "The stigma of psychiatric illness".  I was also diagnosed with the psychiatric illness "somatoform disorder" (at the Mayo Clinic, no less), a year before the tilt test confirmed my diagnosis of POTS.  Subsequent to the correct diagnosis, I developed a real psychiatric illness, called major depression.  I think medical professionals believe mental illness is no more than a malfunction of an organ of the body, and as long as we see this spectrum of illnesses as a "stigma", we shall remain prejudiced against those suffering from them.  My depression affected my life as much as POTS did, and I look forward to the day when people will accept mental illnesses with as much compassion and concern as any other disabling condition.

A comment regarding Olivia M.'s article in the Winter 2004 Newsletter
by Zoe

It is both reassuring and frustrating to read that other POTS sufferers must deal with Doctors that are misinformed as to the causes of POTS.  I, too, was diagnosed with mixed anxiety prior to being diagnosed with POTS, Vaso-vagal Syncope and Reflex Anoxic Seizures.
 
I, myself, am a medical professional and when I visit my GP in relation to my condition I quite often end up leaving feeling upset and angry. I am interrogated in relation to current emotional status, and whether or not this is related to current symptoms.  Due to lack of understanding on this condition, medics seem to hang on to the thought that depression or anxiety are the only reasonable cause of any symptoms. In the end, you question yourself as to if it is 'all in your mind'.
 
Never mind the fact of any other diagnosis. As soon as they see 'mixed anxiety disorder' they act as though there are no other important factors.
 
However we must be strong. Although it should not be our job, we need to try to educate and encourage medical practitioners to research further into the causes and symptoms of POTS.

Things I Believe Help Children
by K. Thomas

A tip: Don't do knee bends or other activities that put your head below your waist. Bend your knees as you stoop, keep your back straight and your head up. If you have to pick things up, sit on the floor and do it.

Don't make a child with POTS bend down to pick up toys, have them sit on the floor as bending is a real killer. Another thing to avoid is letting the child sit cross-legged for long periods, with the back sagging.

One of the best things for children I've seen is a computer chair from Office Depot. It is actually a bounce chair, with rollers, made of heavy duty plastic. It allows the child to move while doing work. I think this helps with circulation, exercise, activity levels, and sensory needs. It's great, and can be used at home and school.

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
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