So unless you live under a rock you have probably heard of the reddit thread #aita (Am I the @$$hole?) if you aren't familiar it allows people to post a situation and their reaction/feelings anonymously and get feedback as to whether or not they are being an @$$hole. It felt appropriate for some thoughts I've been having the last couple of days. However, I don't post on reddit and I wouldn't want to have to write a report on EDS to educate my audience.
WARNING: THE POSTS/POSTERS I MENTION ARE NOT A SPECIFIC PERSON ON THIS SITE OR ANY OTHER. I'm not trying to hurt anyone's feelings I just need to vent. I know the struggle of knowing something is wrong and not having a diagnosis. I know that many of us in the#EhlersDanlosSyndrome community have a variety of co-morbidities and many of us are in pain every single day. This isn't to cause drama but just for me to express my frustration.
For perspective, I am a suspicious person by nature, it's a character flaw, I'm working on it. However, I tend to be more skeptical/pragmatic/logical than others. I wish it was easy for me to trust. I've just been burned so many times that now I'm cautious (overly cautious if I'm being honest with myself). I know that has influenced my feelings on the subject below and I work very hard to keep myself in check. Even if I believe someone is being less than honest I keep my thoughts to myself unless I view the poster or audience as being put in harms way because of misinformation.
So the question is "Am I the @$$hole for being incredibly frustrated with online support communities?"
I see the irony that I am posting this question on a site that falls into the category that frustrates me. But this community is the best I have come across so far, some of you share inspiration daily (looking at you @tierradrollinger23) some of you share your wealth of experience and knowledge and overall this feels like a safe place to ask questions and has the least amount of "noise" which I will define below.
The noise brings me down, makes me tired, makes me question my own experience, leaves me feeling frustrated and sometimes angry. Some days it makes me feel a little hopeless, a little broken.
There are several types of noise. What I find to be the most draining is what I call the self-diagnosed tourist noise. AGAIN I'm NOT doubting anyone's experience, just expressing frustration (and suspicion if I'm being brutally honest). This person has come across and ailment like EDS and diagnosed themselves with this condition, but when they post about their experience it is very clear they don't have an understanding of the condition. It feels like they discovered EDS and have some of the non-specific symptoms and have decided this is what they have, and they put all of their symptoms into that bucket.
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