May I firstly start by saying the following:
Please understand that only one person runs this blog and the associated Social Media pages at the moment and as well as having a life outside of the interwebs, I am also chronically ill with EDS, Pots, NCS, A Seizure Disorder and Gut Dysmotility. Unfortunately this means I am not always available to answer a message, an email or a comment immediately, but I always do get around to answering them usually within a couple of days at max. I get utterly elated when I can actually help someone out or give any advice or help that I can and I have made some lifelong friends through raising this awareness, but please understand, I may not be able to reply straight away.
The reason for this particular post, which I never thought I would have to explain myself about, is because of the following incident this week:
A few days ago over on my ‘personal’ Facebook profile, NOT the Irish Dysautonomia Page or the Support Forum, but my personal page. I was sent a friend request by someone I had never seen or heard of before, I checked this person out and saw that she was from Limerick, other than that there was suspiciously very little else on her profile but considering they are from Limerick, usually people know me through my photography or art past so I accepted without giving it much further thought.
Within a couple of minutes of accepting the friend request, she messaged me saying the following (I will add the spelling mistakes and all!) You may see the original screenshots at the bottom of this post:
Timestamp: 19/10/2015 19:24
“Thank you so much for accepting my friend request, I read your piece on meeting Professer Rodney Grahame, it was so informative, I have got an appointment to meet him next February but can’t take it yet as I only rang the travel abroad treatment scheme today and they said I can’t take it until I get approved first, I have Elhers danlos type 3 and livedo reticularis but my consultant ,Dr (Dr’s Name) in croom hospital thinks I might have vascular,and that’s why he is sending me to London,once again thank you for your article, I hope you are feeling ok today, xx(Person’s Name).”
Please take note that nothing specific was asked of me and as I was quite unwell at the time, I did see the message but decided I would reply a little later that evening or even the next day when I was physically more able to do so.
Just one hour and 26mins later, I receive this:
Timestamp 19/10/2015 20:50
“Hi, I must say I’m very disappointed as I was expecting a reply to my message, if you are supposed to be the Founder of Irish dysautonomia awareness,people like me who are newly diagnosed and need some advice and support as this is life changing ,will be really disappointed with your lack of response,clearly you are all for yourself.!”
Not only was I very taken aback at the entitlement of it all considering, no advise was specifically asked for anyway and why should I have to reply within her 1hr 26min expectations? but when I tried to write back to that message, this time within seconds of getting it, she already had me blocked! Meaning I couldn’t respond to give an explanation (which I feel I shouldn’t have to but I was willing to respond gently anyway) but I was never given the chance to even defend myself and I was hurt at the fact that I had done absolutely nothing wrong to deserve that only give myself sometime to recover in my own life before responding.
If I wanted to I could very easily name and shame this individual, I have the original screenshots and everything, but unlike this person, I have a little more respect for people than that! Take a look at the screenshot of the chat below and you can see it all for your self including the times.
I adore this blog and trying to raise awareness of these conditions. I love the interaction between the members of the social network pages and as I said I have made wonderful friends through this.
I am not an expert, this is not my full time or even part time job, I do this when I am able in my spare time for the benefit of others, not only myself.
All I ask is that people like this particular lady should know how to respect other peoples time, efforts, illness and personal lives outside of the internet.
Gladly, I have never had this experience through Irish Dysautonomia Awareness before, Most people are rational and understand. For that I thank you so much.
I wish I could be more regular with posting but I do the best I can within the limits of my illness! :)
Thank you for taking the time to read my humble efforts.
Fainting Goat (Lette)