*venting* sick of being asked....

[karinosa]

How to deal with this?  When friends/relatives ask how I'm doing and I tell them I had a diagnosis and it is called POTS and I explain what it is, then I get "Are you sure it's not anxiety?"  URGH!!!  Don't people think that I would rather take a quick pill for anxiety instead of suffering with this for the last year??? I want to have a good comment to answer them with but so far I have just kept my mouth shut!  Then they start asking all this medical questions and trying to come up with a diagnosis?? Did I ask for a diagnosis???

Anyway I'm just frustrated and wanted to vent!

By the way, don't know if anyone read before my posts about me taking a whole bunch of vitamins and supplements that the Naturopath had put me on, well I stopped taking them for two weeks and I got really sick, so I guess they are doing something!  I'm starting them again so I can feel a tad better.

Hope everyone is finding a way to cope with their symptoms.

Karin

[halbashes]

I generally explain my illness to others as Dysautonomia, or Autonomic Dysfunction.  Occasionally the conversation will stop there, but usually it will proceed to questions.  This gives me the opportunity to explain my condition further.  It could be explained as a dysregulation of the Autonomic Nervous System which controls functions such as blood pressure, heart rate, respiration, body temperature, digestion, etc.

I am happy that your vitamin, and supplement treatments are working for you!  There are other treatments available for Dysautonomia as well.  Additionally, you may want to consider a cooling vest if you are temperature sensitive.

[karinosa]

Thanks for the reply.  I am learning to deal with this but yes it is very frustrating at times, at least my kids and husband are very good with dealing with all of this and truly understand it, today for one, I'm soooo dizzy that I keep bumping into walls as I walk around in the house, the kids get a kick out of it but it is hard for me to have my world turning around.  This usually happens when it is rainy, does any one else have that?  I can tell as soon as I wake up if the humidity is too high as I'm dizzy before I even get up, today is like that.

Anyway, thanks for letting me vent and glad that you were able to change your job and still remain in a similar area.

Take care,

Karin

[somemonkey]

I just say I have autonomic dysfunction. My ans doesn't work automatically.

[Angel007]

It can be very frustrating dealing with "amatur doctors in training" who try to diagnose your symptoms.

Thing is - most of the time they are only trying to be helpful and friendly, and don't realise just how irritating it can get. Most of these people don't suffer from long term chronic illnesses and therefore don't know what it is like, or what you are going through. Their only way of dealing with it is to try to "help" with suggestions. I haven't got any good comebacks yet...if you do use one, dont be offensive with it - they are only trying to help.

I always get the "When are you going to learn how to drive?". I normally just say "I can not drive for medical reasons" - normally works. I told one work collegue that I can't drive due to coordination and balance problems...their suggestion? "Have you thought about getting a MOTORBIKE licence instead!"  JEEZE If I cant balance in a car - what chance would I have on a motorbike?! I'm sure some people just don't think!

I had to change career from Radiotherapy (cancer treatment) to Cancer Research as I couldn't keep up with the physical demands of Radiotherapy. I still work in the same department - which of course then leads to all the questions about my career and why I changed (and took a drop in pay).
As part of the job, I had to jump up from sitting position, and run through a maze of corridors into the darkened treatment room, and move a machine around the patient (which threw off my sense of balance big time!) Seems none of them noticed the fact that as I ran through the corridors I often missed the turn and bounced off walls!

I worked in a different department for a while - and actually left an imprint in the corridor wall - some achievement as it was a 1 metre thick lead lined cement wall! OUCH! That was when I decided to change careers for my health and safety (as well as that of those I was working with!)

Another great one..."You should exercise more - that will help!" - yeah, right - I tried to join in with exercise classes - talk about unco! I was so embarrased when the instructor looked at me and said "stop mucking around!" the whole class looked at me and laughed! I never went to another class again!

Unless you have a chronic illness that has been misdiagnosed for years, or know someone in that situation, there is no way you can understand what it is like, or how frustrating it is to be told "it is just anxiety", "have you had your eyes checked? Glasses could help" or "take a couple of deep breaths and you will be fine!" Working in a medical field I get a lot of collegues asking medical questions -and trying to diagnose. Interestingly, most of the real doctors don't say a thing :)