For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Taking Responsibility

These days it seems people have a sense of health entitlement with little responsibility placed on the patient to manage their own wellness.  We expect to be able to eat whatever and whenever we want, we can decide to smoke, take drugs, be inactive, get addicted to caffeine and sugars.  And when we get sick, we demand answers from our physicians.  We want a quick fix and it should be painless, convenient and cheap. At what point do we take responsibility for the state of our own health?

People who suffer from POTS or other forms of dysautonomia aren't sick because of self-neglect, BUT from what I have read, heard and seen, when we are ill with dysautonomia: fatigued, in pain and discouraged we can totally abdicate responsibility for our own health management.

I've done it:
  • not keeping informed about the condition
  • following instructions from doctors whom we KNOW are wrong
  • making unhealthy food choices
  • doing nothing
When I read the postings on some of the dysautonomia message boards I get concerned when I read about people experimenting with any kind of medication hoping they will find relief from their symptoms. Often it appears the meds are prescribed by doctors who not only know little about the condition but make their patients feel like they're crazy!  

Maybe we should expect more from ourselves.  Maybe we should work harder towards total wellness and not just look for quick fixes for alleviating symptoms.  Maybe we should be doing as much as we can to lead a healthy lifestyle; eating right, exercising as we can and keeping ourselves informed with the latest research on our condition.  Maybe we should take total responsibility for our own health.  


  1. I totally agree with you. I am an Australian mother of 4 girls who has POTS and joint hypermobility syndrome. I found your blog the other day when searching for information on Dr Levine's exercise program.
    I would love to know more from you, do you have a contact email for the exercise centre who is associated with? My email is:

  2. I totally agree too, I am also in Australia and have only just been diagnosed with POTS, even though I have struggled with the symptoms for the past 5years.Here in Aus there is so little support and knowledge enough to drive anyone crazy, but I am determined not to let that happen.