Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Hello. I was recently approached by someone who has been a strong supporter of my family (my two girls and I). He asked if we would be willing to be interviewed for an article for the front page of the town paper. The disclosure of the EDS dx would be a small part of this article which would center on some very private and personal details of our lives. It is to put a 'face' on people that organizations have helped. I have a daughter who wants to do this for several reasons; one is to recipercate and to thank those in the community who have helped us in very large ways. It will be one of those 'coming from trenchs and being successful in spite of it all' sort of articles. My second daughter does not want to do this. She is still in high school and does not want this attention when we are finally getting on our feet. I was wondering if there was anyone who would be willing to write to me -- off list is fine -- on ways that this did *not* turn out favorably for them. Such as: loss of insurance; loss of future jobs; being permanently defined by the label of 'disabled'; giving some people too many intimate details about your life and losing your personal boundaries in this way; huge backlashes from family members in denial; etc. I feel that this information will help me to make a better decision with this; to perhaps shield us by preparing for what may come up. I would be interested to hear anything that anyone wants to share. I have to make this decision by Tuesday. I am on digest so if it may take me a day to resond. Blessings. Quote Link to comment Share on other sites More sharing options...
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