OUCH(UK) Organisation for the Understanding of Cluster Headache


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Spreading awareness

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Last post
#1 Sat, 19/06/2021 - 22:33
Last seen: 1 year 4 months ago
Joined: 21/05/2021 - 10:47

Spreading awareness

Hi there! 

would love to know other peoples experience of explaining their conditon to others. I often get mixed reactions due to a lack of understanding of the seriousness and the detrimental effect it has on someone who suffers. How do you explain the condition and do you know any resources that I can give people to help them understand? Tired of people telling me I'm over reacting to a migraine --

Thank you all


Sun, 20/06/2021 - 21:24
DavidH 7
Last seen: 3 weeks 4 days ago
Joined: 26/02/2014 - 15:13

At work, I email the relevant link in the FAQs at the top of the page but with some explanation/context.

Mostly, I guess, I want people to know that there will be times when a) I can't be wise or make wise decisions (because of drugs and/or pain) and b) I really need to just be left alone - there are two people at work who will make sure I'm safe and, for example, can get home if I need to ... but everyone lets me get on with it, which is how I like it to be.

Do you have a sense of what you want people to know or understand? 

Mon, 21/06/2021 - 07:49
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 7 hours 17 min ago
Joined: 19/02/2014 - 10:16

Hi Maddie

Here's a download to print out which is aimed at explaining the condition to friends, family and work colleagues https://ouchuk.org/downloads

Hope this helps.


Dorothy (Trustee)

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