Fast forward to last year at age 37, when I requested my doctor send my 13 year old son and I to a geneticist in Calgary. I knew deep down what my diagnosis was, and it was less than an hour in to our appointment that it was confirmed. Ehlers-Danlos Syndrome Type I & III crossover. Finally! An answer, a step forward, and hopefully a path to follow for treatment and preventative measures. It turns out my family doctor knows nothing of the disorder, so his advise to "take Tylenol" is a bit moot at this point. The greatest thing about having a diagnosis is the support I have found in droves on the internet. As soon as I had a diagnosis, I joined an Ehlers Danlos Support Group on Facebook.
As soon as I joined, I saw the name of an admin and I knew right away that I recognize that name. I googled and lo and behold, she was on an episode of Intervention, wherein she was addicted to extremely high amounts of Fentanyl (8 times the normal dose) in lollipop form that she had acquired from "doctor-shopping" and going from pharmacy to pharmacy. After the episode, she even admitted to injecting the fentanyl lollipops, but yet she "was never an addict." The episode had centred not on Ehlers Danlos Syndrome (as the expert on the show from the EDNF had stated that none of her behaviour was indicative of anyone with EDS), but more so on the effects of the addiction, including mistreatment of her brother, Sam, who had given up his life to take care of her. Everything from having to tape maxi pads to her, to getting her whatever fast food she wanted and putting it in a spot where she could reach it without making left turns (she claims she is unable to make left turns). She yelled at him, berated him and all I could do was grimace and feel infinitely bad for him.
She ran screaming from flowers that she claimed emitted acid that would dislocate her joints. She screamed when she was around audio-visual equipment because she also claimed it would dislocate her joints.
Yet, she danced like a mad woman in her bedroom, jumped out of a car sunroof, and ran through a parking lot like nothing was wrong.
(I am putting the clip in, because she likes people to watch her episode, so I don't think it's an issue)
Her parents, hard-working Chinese immigrants, flew out from Connecticut to California to be a part of the Intervention, and she yelled at them that they had brought too much EMF with them from Connecticut, where there "isn't enough people to absorb it."
In the end, she went off to rehab where she was diagnosed with a delusional disorder. I could go on and on. In recent months, she claimed that cactus plants blocked EMF so she could have a computer at home again... and went so far as stealing a cactus plant from someone in her condo building and dragging it to her condo. If this is what she believes, fine. But there's a fine line where reality and imagination meet... for some, the lines are blurred.
The mania carried over into the Facebook support group where you didn't dare disagree with her 'science', or call her out or question her. On Twitter and Youtube the outbursts and continuation of her mythical science abounded.
Long story short, she didn't like anyone disagreeing with her, so she booted anyone out of her group that didn't believe her every whim. On both Twitter and Facebook, she harassed her interventionist, Ken Seeley, stating that he is a terrible person and so forth. She didn't like an exchange I had with her on Twitter, that Ken Seeley favourited, so she again blathered to her 'followers' on her then-open profile that I was this terrible person who thought I was better than everyone else because I work and because I don't believe that every single EDS patient needs heavy narcotic/opioid drugs. This was in response to her comment that people with EDS REQUIRE narcotics.
All I said was that we don't ALL require them, that some of us work and carry on fairly normal lives in spite of pain, and that we don't all need to be stoned out of our gourds to live. Yes, there is a time and a place for narcotics. Yes, some EDS patients truly require them. Yes, some are incapacitated and can barely move. Of course! There are SO many degrees of pain and disability with this disorder, but seriously, treat each case as it needs to be treated. Don't blanket us all saying that we all need narcotics. That is an excuse for drug use. Leave it for the people that truly need it, as EDSers, we will probably all be there at some point. She even stated since moving to an EMF-free home (if those truly exist) that she no longer needs narcotics, so I am especially confused by her anger towards my statement that we don't all need them.
She simply didn't like my response that it's possible to have EDS and thrive. It's not necessarily a choice, but it's reality. To this day, she states cannot work (some people can't, I agree), had her parents buy her a new condo, can't have a computer or a cell phone in her house or her joints with dislocate due to the EMF... but yet she attends celebrity events (namely Stana Katic and Nathan Fillion related events) surrounded by hundreds (or even thousands) of people, all carrying cell phones. ComicCon, book signings, many events that are surrounded by the very things she states she cannot tolerate... but there she is. She does 10x the amount of activity that I do, and berates me for being able to work?
Does this make sense to you? I am giving you the benefit of the doubt, you are smart and rational people. When you listen to one side of the story and take it as gospel, you're missing out on an opportunity to weigh both sides and learn truth, not hearsay. Some of you have even called me an 'anomaly' because I work and don't take pain medications at this point in my life. You question if I "even have EDS"... but yet you don't question the expert from EDNF that stated that he sees no indication of EDS in Linda? Go ahead, that's your right as free-thinking human beings. I can upload my report from the geneticist (and blur out the things about my son, for his privacy) if it helps at all.
We know things about EDS. We know things about EMF-sensitivity. Do your research and decide for yourself but do not blindly believe in pseudo-scientific 'facts' fed to you. This also includes someone's words about others. If you believe what she's saying about me, then I implore you to look a little deeper. See the facts. If ANYONE out there can provide me with links about EMF from cell phones and computers (or certain coloured clothing or certain types of flowers) causing joint dislocations, please share. I am interested in learning FACTS, and I have come up empty-handed in this regard.
In the meantime, I wish you all the best. I wish you many spoons, low-pain days, and long and bright futures.
