I would also add that, along the lines of what Agate wrote, what I probably would have appreciated the most was a very kind, sincere letter from friends acknowledging the diagnosis and letting me know that, no matter what, they would be there for me through thick or thin, good or bad, the highs and lows.
That I could count on them, whether I needed an ear to listen, support, assistance, a ride, a shoulder, that they were "all in" for the ride with me, no matter what. That they were trusted friends who I could confide in freely and privately.
That would have meant the world.
And then someone showing interest in what I knew about it, how it affected me, how did I feel about it. And for friends to regularly check in, find out how I was doing, did I need anything, what was happening in my life...not in a helicopter way, but showing genuine interest in what was going on with me, asking questions that showed a desire to understand and respect better my limits or limitations, following up with issues I might have mentioned earlier, keeping up with the narrative of my experience with interest, and demonstrating a continuing and ongoing expression of involvement as a reliable and trusted friend, not just casual words of platitude that weren't followed up in any substantive way.
And because so much of the experience begins in an invisible way, it truly does mean so much to have people that can be trusted, without question, when a limit is expressed. It truly feels great just having soneone that accepts that I have to cancel because I'm too fatigued, that doesn't question it, that doesn't let it affect them inviting me again, even if I may not be able to make it the next time either. Something as small as that is really worth gold in validating my experience and not letting it impact the relationship or be taken personally in any way. Knowing friends are going to continue to be there, who SHOW it, is a security that has untold value in a diagnosis of utter insecurity and instability.
ETA - along the lines of funnylegs' suggestion, some little knicknack or wallhanging, teddybear, etc. with a line about how important I was to them, or the meaning of friends, etc. I like that idea!
That I could count on them, whether I needed an ear to listen, support, assistance, a ride, a shoulder, that they were "all in" for the ride with me, no matter what. That they were trusted friends who I could confide in freely and privately.
That would have meant the world.
And then someone showing interest in what I knew about it, how it affected me, how did I feel about it. And for friends to regularly check in, find out how I was doing, did I need anything, what was happening in my life...not in a helicopter way, but showing genuine interest in what was going on with me, asking questions that showed a desire to understand and respect better my limits or limitations, following up with issues I might have mentioned earlier, keeping up with the narrative of my experience with interest, and demonstrating a continuing and ongoing expression of involvement as a reliable and trusted friend, not just casual words of platitude that weren't followed up in any substantive way.
And because so much of the experience begins in an invisible way, it truly does mean so much to have people that can be trusted, without question, when a limit is expressed. It truly feels great just having soneone that accepts that I have to cancel because I'm too fatigued, that doesn't question it, that doesn't let it affect them inviting me again, even if I may not be able to make it the next time either. Something as small as that is really worth gold in validating my experience and not letting it impact the relationship or be taken personally in any way. Knowing friends are going to continue to be there, who SHOW it, is a security that has untold value in a diagnosis of utter insecurity and instability.
ETA - along the lines of funnylegs' suggestion, some little knicknack or wallhanging, teddybear, etc. with a line about how important I was to them, or the meaning of friends, etc. I like that idea!
Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.
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