In the last day or so, a friend of a friend of a friend (I know, long connection) reached out because she was concerned she may have EDS and needed someone to talk to. So, I gave her some advice and sent her a few links to things I thought may be helpful. She decided to post one of the links I sent on her site and asked a follow up question regarding one of the questions. After I wrote my feedback, one of her friends wrote back on it "Hypochondriac, yes."
(This is the link--it actually is helpful, but poorly translated from a Chilean rheumatologist.Yes, some of it is probably a little bit of a stretch but a lot of things on this site I was examined for by my geneticist. It is pretty legit. http://zebrasoup.me/2012/07/27/when-to-suspect-eds-iii/)
Let me just say, I never purposefully try to come across as a bitch. But once shots are fired and when it comes to my medical conditions, I will verbally rip you apart. I have mentally and physically undergone too much shit to just sit here while people go on thinking nothing they say has repercussions or comes across as offensive to people.
I know I'm sensitive to this kind of stuff and whether people know or not they are fueling a fire within me, I just can't help but think what kind of a person you are if you feel the need to comment on a Facebook friend's post about a life-altering condition and make her (or me) feel even shittier about it.
I'm not sure how comfortable I would ever be with sharing my medical conditions on Facebook..(I don't feel like it's most of my FB friends' business and they aren't entitled to know. I write my blog for friends/family and other people with chronic pain. It's all I care about. I don't feel like someone I haven't talked to from high school needs to know what's happening to me.)
Maybe that person will think twice about what they say to people. I am the first to admit I can be a bit hot headed and sometimes am a little too excited when I come out of an argument with my opponent in tears, but seriously people, back off. (I am also in the midst of a ridiculous flare that I've had the last few days, so that knocks any tolerance I would've had to this BS out the window.)
Noted to all non-chronic pain sufferers: do not f*&$ with someone in pain. It won't end well for you. I've seen it happen to other people from chronic pain people. We are not a group to be messed with.
I went to fashion school, I have a tough skin and I'm used to dealing with petty people so I can shake it off but I can't help but feel bad for this poor girl and watch her experience (as a relatively new chronic pain sufferer) and see someone be so mean for no reason for something she's really struggling with. When I first started having pain, I was so beside myself and feeling so vulnerable that I would just break down crying every time I felt like someone slighted me with their ignorance.
Maybe I'm in the process and stages of grieving with what's happened to me, but I don't think I'll ever be the kind of person to just brush people off without putting my two cents in first.
I feel like the moral of every social related post I've been writing lately has been "Don't be a dick." but somehow it just keeps happening. Ain't nobody got time for that.
I also apologize if this post was slightly aggressive. I could blame it on drugs, but that would be a lie. I swear some people just bring out the crazy.
PS. I plan on getting a new opiate patch tomorrow when I get injections which could either miraculously help me or send me to the ER, but what else is new? Such is life.
Hey, my name is Addy and I just read your article "Her Story: A Chronic Pain Disorder Took Everything Away From Me," on her campus. I also have Ehlers Danlos Hyper-mobility along with a handful of other weird disorders that go along with that too.:p When I read you article I was excited to know that there was another person in the fashion industry (hopefully after college for me!) with Ehlers and chronic pain. It kind of lifted my spirits a bit to know that you can deal with Ehlers and be successful in the fashion industry. So I just thought I'd say thanks!
ReplyDeleteAw, thank you so much Addy! I'm glad you enjoyed the piece and I wrote it for that exact reason! I hope you find a wonderful job in the fashion industry and please reach out if you have any questions regarding you H-EDS or working in the industry! Good luck with everything!
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