Ok so i have battled ch for the last 5.5 years but just recently got diagnosed by an e.r. doctor. Im still trying to understand it myself and need help making ppl understand. My family thinks im making it up and just using it as an excuse to do drugs. My coworkers think its something like depression or anxiety. I refuse to let myself get fullblown in front of coworkers and family (1 cause it is scary for them to watch and 2 the added anxiety doesnt do anything good for me) the very veey few that have seen me at a kip6 are now scared of me wont talk to me or even come close to me. How can i help ppl understand this isnt for attention or marijuana and im not making it up. For those that have seen it how do i make them understand im not dying and im not contagious. I have tried the letters and different research but to get someone to actually look at it before they throw it away seems impossible. I just dont want to be a disease and i dont want ppl to see me fullblown. There is very select few that get to see me fullblown but they are my true supporters and they know how to help.

jatimom,
    
         I told people to go to youtube and see some videos
and if they don"t believe you they really aren't your friends plus I don"t care what other people think.

Mark.

Ive shown many ppl and they cry but dont believe me still. Im to the point of just staying home and not seeing anyone. I need my family to understand and my coworkers. I work in a team orientated place amd need them but they run away

Jatimom,

Welcome to CH.com. Getting people to understand is something we've all experienced.

Print the following and ask them to read it.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Keep posting.

Peter.

Jatimom wrote on Apr 30^th, 2017 at 11:10am:

...thinks im making it up and just using it as an excuse to do drugs. My coworkers think its something like depression or anxiety.

Go to the Cluster Headache Specific board, about half way down page 2, and have a look at a thread called 'Dopiest Responses to CH'.

You'll find nine pages of people agreeing with you completely.

AussieBrian wrote on Apr 30^th, 2017 at 9:45pm:

Jatimom wrote on Apr 30th, 2017 at 11:10am: ...thinks im making it up and just using it as an excuse to do drugs. My coworkers think its something like depression or anxiety. Go to the Cluster Headache Specific board, about half way down page 2, and have a look at a thread called 'Dopiest Responses to CH'. You'll find nine pages of people agreeing with you completely.

This link will take you right to it - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It can be really hard explaining CH to some people who either don't really care or don't want to make an effort. But then there are some people who do care and do take an effort to learn what they can.

The problem is when family and work colleagues are in the first group, as you've found.

What can help a bit is that you're not doing it to get pain killers as they don't even touch the pain and in the years I've been here I've not seen anyone say they've encountered anything more painful than a full blown CH.

One poster (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - 7th post down):

Quote:

I broke my right femur in South America. I got a helicopter ride to a boat 30 minutes later, with no medication. On the boat, 3 hours after the injury, it was manually reduced and splinted, and I received minimal morphine, to prepare me for the 9 hour ride on a military cargo plane to a real hospital for surgical setting. That was the worst pain I have ever experienced before my cluster episodes.

Not sure what else can sum up how CH is pretty painful and nothing like that you'd ever make up, although in that dopiest response thread someone ended up in a psychiatric hospital as they were thought to be making it up as it was beyond the experience of the doctors they were seeing!