Stories of Kindness from Around the World

Helping Others Know They Are Not Alone


--by Wotserface, posted Jun 10, 2008

For 20 years I have been a sufferer of IIH (Idiopathic Intracranial Hypertension), and for the better part of it had never known anyone with this illness. It wasn't until I lost my peripheral vision and some mobility in 2001 that I turned to the internet.

Eventually I managed to connect with other sufferers of this dibilitating illness, and when it became so bad that I had to be early retired, the groups I had found became a comfort.  One such group I am now a moderator in, and I'm able to share my experience of IIH with the many members in it, and especially with the newly diagnosed. I try to help motivate and inspire them, and where possible to help them smile. Most of all I try to give them optimism and to show them that despite this illness, they are still capable and worthwhile people.

I keep in touch with them through the group, and email, and several in the UK by phone. Knowing that I am helping these people from my own experiences with IIH, however big or small. It's the least I can do!

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Readers Comments

joyful wrote: Hi wotserface! Thank you so much for sharing. Sometimes we get so caught up in our own lives we do not realise what some folks face every day. I wish you peace and love and hope a cure is found very, very soon, my friend. Joyful :-)
Wotserface wrote: I also do the community newsletter which is published to the web, in the hope that it reaches others. It's not a standard newsletter, we include members stories,information,a fun section and useful links. It's been a success up to now, and we have managed to gain new members since it's first outing, and members are passing it on to friends and family, so hopefully we are not only helping but educating others too.
lmil1954 wrote: Hey wotserface...(cute name) I am glad to have read your story. When Im not at work, and my house has been tidied enough for me, I am here. I am glad you are here too! LindaM")
lOVEBUG wrote: God Bless you for taking time to help others. I will be praying for the research to be done on this condition. Thank you for making me aware of this.
JuneBug wrote: It is always great to have support and feel one isn't alone in any situation...You took your circumstance and used it for the good instaed of feeling sorry for yourself...I commend you!!! God will bless you for it! :}
raqui wrote: I agree sharing your live experience with others makes them feel they are not along. I wish you the best. HUGS Raqui
Wotserface wrote: Thank you so much for these comments and your positivity.By sharing my experiences I think it helps other sufferers to know that although their life has been changed forever by IIH, they can still have a decent quality of life, and that IH is part of them and not who they are.Being able to encourage them in this way, makes living with this illness more bearable, as hopefully I'm helping to make it more bearable for them

perseverance wrote: what a way to share and care.THE INTERNET IS A BOON AND YOU HAVE PUT THIS GREAT TOOL TO PROPER USE FOR A NOBLE CAUSE WE PRAY THAT MORE RESEACH ISCARRIED OUT IN HIS FIELD BY WHICH THE FUTURE GENERATION WILL STAND BENEFITTED.THANKS FOR YOUR POST FOR ENLIGHTENING US
brighteyes wrote: You are an inspiration to us and many more....I love your courage and positive attitude and your desire to help others and connect, because of this,
YOU ARE MY KINDESS HERO OF THE DAY!

NONE OF US ARE ALONE...BUT IF WE DO NOT SPEAK OUT OR SEEK OTHERS THEN WE WILL NEVER KNOW....I AM SO GLAD YOU FOUND AND GAVE AND CONTINUE TO GIVE SUPPORT TO OURS.

I had a similiar experience with hearing loss but with the new technology, I have been blessed with the ability to hear again through a cochlear implant....a support group BUT mostly a few friends with similiar issues MADE ALL THE DIFFERENCE. WE SUPPPORTED EACH OTHER AND STILL DO LIKE YOU & YOUR GROUP!

Keep up the good work that you are doing....you do make a difference....and that's for sharing your story!

Blessings,,,,Brighteyes ;)

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