IIW15: Fire Away, Fire Away

Unless you live with an invisible illness,

you have no idea how hard it is to just to survive through the day.

The constant battle against your own body.

 Fighting each day to “live”, despite being sick.

Not just today – but every day.

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The hardest part of having a chronic illness, though, isn’t being sick.

It’s overcoming the way others perceive chronic illness.

It’s the lack of understanding and compassion.

It’s the judgment.

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normally wouldn’t share a conversation like this,
but seeing as though today marks the start of Dysautonomia Awareness Month,
on top of the fact that Invisible Illness Week is still going on, 
I felt it was appropriate.
So last night I asked a few of my friends and family to share the following picture on Facebook to support the beginning of Dysautonomia Awareness Month.
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Quite a few friends did and I was really honored that they would
support both me and this cause.
However, shortly after one of my friends posted this picture to their Facebook page  there was already a relatively snarky remark left.
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Granted, the person who said this is not a close friend of mine and I don’t know him very well, but we are acquaintances and I assumed there was at least mutual respect. In fact, I’ve never had a problem with him and honestly took the post as just him not knowing anything about what dysautonomia was. Not a lot of people have even heard about it, let alone understand it. So I did respond back to his post to inform him that both POTS and dysautonomia are not the same as having an anxiety disorder. Who would have thought something so harmless would turn into a debate back and forth.
The rest of the conversation goes like this:

Me: Both anxiety and POTS are consistent with having autonomic nervous system symptoms. POTS, though, is an impaired function of the nervous system which causes symptoms, whereas anxiety stimulates the autonomic nervous system through the flight or fight response.

Him: Either way, it’s stimulus through outside sources.

Me: Not true. Stimulus in POTS is internal.

Him:The internal can only be influenced by b the outside and vise verse. Good try though.
Me: How is blood circulation caused by the external? Enlighten me
Him: You weren’t talking of blood circulation. If you were, it’s easily influenced by the outside sources such as being offended or by adrenaline inducing circumstances.
Me: So based on your thinking patterns, people with cancer have a form of anxiety because environmental influences caused them to have cancer
Him: Possibly, but never definitive.
Me: And we were talking about how POTS is not an anxiety disorder.
Me:
Nichole Everett's photo.
Me: The activating stimulus in POTS (blood circulation) is caused by gravity. The stimulus in anxiety (adrenaline) is caused by a stressor.
Him: Therefore the outside.
Me: But I’m so confused as to why POTS equals an anxiety disorder?
Me: The physiopathology of these two conditions are completely different.
Him: Stress volume.
Him: Not really if the definitions are looked at.
Me: What definitions?
Me: POTS isn’t caused by stress or influenced by stress.
Me: It’s influenced by standing. It’s orthostatic intolerance

Him: But caused by outside sources such as any neurological disorder.

Me: It’s a biological disorder.
Me: Any disease or condition can have outside influence. Doesn’t mean they are similar or related.
Him: True. But the correlation between the two causes stress on the body. Both do the same thing. They effect the brain through oxygen levels.
Him: And other factors.
Me: Diabetes causes stress on the body. Is that an anxiety disorder? Asthma causes effects on oxygen levels, is that an anxiety disorder too?
Him: Could be. Hell, anything these days could be. But those are different. The one we are discussing uses psychology as well as biology. Both of which are used to make victims out of either circumstance.
Me: In not trying to argue, but saying POTS is anxiety is not only inaccurate but part of a bigger problem.
Him: Not inaccurate by any sense. Rather a different take upon the problem.
Me: The real victims are the people misdiagnosed because people don’t see the difference.
Him: The difference is merely a matter of opinion. Anything is really.
Me: It’s completely inaccurate and not based on any science other than the fact they both have outside influence, like any other condition.
Him: But so is the rest of psychology in that matter.
Me: But POTS is not a psychological condition. That’s my point.
Me:
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“POTS is often underappreciated by physicians, which can impact on the patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head”. Historically, many patients with PoTS were given a diagnosis of Chronic Fatigue Syndrome/ME, anxiety or panic disorder.

However, one key factor in PoTS is that symptoms generally occur when standing upright rather than in a situation that causes distress or worry, as in panic disorder”(Taken from Stars.org.uk)


I probably shouldn’t have started this conversation to begin with.
Or continued going back and forth.
But what he was saying was really wrong on so many levels.
 It was just another reminder of how others minimize or invalidate those of us
that do have an invisible illness.
I feel like I am always having to explain my condition to others
and prove how sick I am.
Still, it was my choice this time to continue the conversation.
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Now don’t get me wrong, anxiety is awful and
having an anxiety disorder can cause many problems in quality of life.
I am not minimizing that by any means.
But given how the conversation started, I think it was meant more as
“it’s all in my head”.
Which is pretty insulting to both conditions, really,
as they both can be really debilitating conditions.
And I’m sorry, neither psychology or biology are “used to make victims out of either circumstance”. They are illnesses – both of them – and they are REAL.
One is psychological. One is physiological.
And both suck, just in different ways.
More importantly, though, it happens way too often that POTS patients are misdiagnosed as having an anxiety disorder.
These two conditions are very different in etiology – and therefore, in treatments.
To be honest, I’m not mad or even hurt by this conversation.
I’ve already heard it too many times as it is.
I’ve been told it’s psychological my entire life.
I just wish there was more understanding
and that people, in general, would take the time to learn
about what these conditions are and what the implications really mean.
All it really takes is just a few minutes of open-mindedness.
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Is that too much to ask?

7 thoughts on “IIW15: Fire Away, Fire Away

  1. RachelMorristhemyastheniakid says:

    I have found over the years you can’t argue with stupid!

    It is so depressing when you have conversations like these with people you assume of have a reasonable level of intelligence. It is like when I was told if I let God into my life my condition would go away….the person that told me this then went on to develop Cancer. They couldn’t see the irony.

    Thanks for posting, I love reading your blog.

    Rach x

    Liked by 1 person

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