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NDPH Community NDPH Support Forums General & Support How to explain NDPH to family and friends
 

How to explain NDPH to family and friends


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11/16/2007 15:37
MaryR
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 Hi everybody, I know we already have a thread with stories about the people who don't quite "get" what NDPH is really like. For this thread I would like to hear your most effective explanation of NDPH for friends, family, employers ect. Anybody who needs to know what your condition is.
Mary
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11/16/2007 15:40
MaryR
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 My explanation usually is something like "It is similar to a migraine except it doesn't stop, and my medication has made it less intense." Most people seem to get a clue at least about how debilitating it is after I say that.
Mary
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12/03/2007 16:19
BritChick
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 I was saying at first something like "I woke up with a headache on the 7th July of this year and it hasn't gone away yet" later adding "not even for a moment" but people obviously thought I was exaggerating and I meant I got headaches (plural) and would say in surprise and disbelief "so you have a headache now?" "Yes" I say, "it wakes me up in the night."

As a result, the more effective explanation is "I have a chronic pain condition called New Daily Persistant Headache, which means that I have a 24/7 headache which varies in intensity and for which I am trying a variety of treatments."

Inevitably the response, now later in the conversation, is still "so you have a headache now?"
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12/03/2007 20:13
MaryR
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 I sometimes get the "do you still have a headache" question after people find out about it. I usually tell them that I will be very very vocal about it if I ever don't have a headache. I will probably call everyone I know. The one time I had 15 minutes without pain I did call all sorts of people to tell them, even after I knew it was back just because 15 minutes with no pain was such a breakthrough. Only people who have this thing would understand how huge it is to be out of pain for 15 minutes.
Mary
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