Tuesday, December 9, 2014

Cracked.com Talks EDS, Fails Miserably

Today, Cracked.com posted an article, 6 Weird Realities of My Life With an Awful Superpower". The article was about Stephanie Erdman's experience with EDS, and while everyone with EDS is different, I couldn't get past some of the glaring inaccuracies and omissions perpetuated within.

The largest error with the article is in regards to the different types of EDS. It's incredibly important when writing about EDS to point out that there are several different types with entirely different symptoms. In the case of the Cracked article, this information isn't included. At the end of the article is this blurb:
"Author's note: I also wish to recognize that there are also several terminal forms of Ehlers-Danlos syndrome, and my experience isn't the same as that of people with those forms. Also, invulnerability to pain meds has actually led to suicides, because the disease becomes impossible to handle, leading some of us to self-medicate. Sorry to save all the bummer for the end."

Okay, so all the reader gets is a vague reference to "several terminal forms" and the standard 'Everyone is different' explanation. What about the other non-terminal forms of EDS? Why are we not naming them? The article does not even link to an overview of EDS. Not even a quick hyperlink to Wikipedia, which is better than nothing.

Another big problem with Erdman's view is that she perpetuates the "circus freak" stereotype of EDS. I don't know about you, but I try not to show off my dislocations and ability to fold myself like a pretzel. She also includes supposed symtoms that have nothing to do with EDS. 
  • Point #6 of the article is "Giant Stature (Along With Giant-Sized Growing Pains)". Large stature is not a common attribute of EDS, in fact, it's more commonly linked to Marfan Syndrome, a completely different connective tissue disorder.  
  • She refers to EDSer's brains being "prone to short-circuting" and includes a link to this PubMed paper. That paper says nothing about brains "short-circuting", and the only mention of brain issues at all is in reference to patients with Down Syndrome, not EDS.
  • Point #2 talks about "The Ability to Tap Into the Secret Side Effects of Prescription Drugs" with zero link to EDS whatsoever. 

My biggest issue overall is that she completely downplays the seriousness of living with EDS. Though the article is about her personal experience, it's written as though EDS is a moderate annoyance in life/a cool parlour trick, and while it may be for her, she should still point out that EDS can be a severely disabling condition for others. 

Basically, I'm disappointed that what could've been an awesome article spreading awareness is nothing more than an inaccurate, sloppy mess. Cracked could have and should have asked more EDSers about their experience with the condition to get a full view of what life with EDS can really be like, as opposed to writing an article that is wanton click-bait.

On top of it all, when I went into the forum to point out and dispell some of the errors via Q&A, one of the mods locked my post. When I posted another thread with a clearer statement, she deleted it. Well done, Cracked, you won't even allow discussion. What the fuck is the point of a forum if not to discuss? 

I'm frustrated.

Saturday, July 12, 2014

How Being Diagnosed With A Disability & Being In The Hospital Helped Me Overcome My Body Image Issues

I've been M.I.A from the blogosphere for a while now, but I've returned, and I would love it if you would all share this one as far and wide as possible! (URL: http://jesshaseds.blogspot.com/2014/07/how-being-diagnosed-with-disability.html ) 
This post was inspired by the body shaming media, and all the women (and men!) who suffer from body image problems of all types. So, without further ado, this is my story. 

     We all are taught from a young age that being stick thin and flawless is the ideal body type. We endure brainwashing at the hands of the media, who airbrush and photoshop flaws away. I was one of those insecure teenagers, some years ago, who longed to look like the models in magazines. Instead I looked in the mirror to see a 5' 3.5" chubby girl that I was sure no boy would be interested in. This is the story of how I overcame the insecurities I had about my body thanks to an incredibly unlikely way: by being diagnosed with a devastating genetic disorder and enduring treatment for many secondary problems.

    When people hear the word "disability" a certain picture comes to mind. Everyone has a stereotypical view of disabled people as a whole, but we are all very different. Some people are born with disabilities, others are injured, and some of us were even as close as one can come to "normal" as possible, up until a diagnosis changed our lives. I am from the latter category.

     Born in the Midwest in the late '80s, I was perfectly healthy. I suffered frequent ear infections & strep throat (what young child doesn't?), and was a bit of a late walker, but I was your average kid. We were broke but that wasn't a huge issue in my life. As I grew, learned to read and watched television, I became aware of what was considered the "perfect" body. By the time I reached middle school, I was incessantly bullied for looking and behaving outside of the norm. I was called ugly, fat, and pretty much every other insult in the book. Things only got worse as I got older. Then, just after my 16th birthday, my world stopped.

     I was at an appointment with an Orthopaedist, and while waiting I began absentmindedly playing with my hands. My favourite fiddly trick was to pull my thumb down to touch my forearm. When the doctor finally came in, he saw me playing with my hands, and asked me to do the thumb trick again. He told my mother that she should take me to a geneticist, as he suspected I had something more going on. That's how I came to the day the world stopped turning. 

     As I sat with my mum in the geneticist's office, she told me that she would need to have me do a few tasks. She ran me through the Beighton Score, as part of the larger Brighton Criteria. I scored a 9/9, indicating that my joints were incredibly hypermobile. At the end of my appointment, I was given the news: I had a condition called Ehlers-Danlos Syndrome, Hypermobility Type (a.k.a. Type 3). It was genetic, and I likely inherited it from my mother. When we got home, we both researched the condition. Only then did I understand how the diagnosis would impact my life. It opened a huge can of worms. For years I would see doctors, GPs, and Specialists on a nearly bi-weekly basis.

     EDS was not my only diagnosis. I had many other medical problems that had been overlooked or ignored, and some of them were severe. That December, I had my first major surgery, a mandibular advancement, to correct a short lower jaw. While the surgery itself was uneventful, the post-op was a horrible, life threatening mess. I had a terrible reaction to the anaesthetic, resulting in the frantic paging of my doctor and anaesthesiologist over the intercom, and my mother being brought to my bedside in recovery. 

     After they managed to get me stabilized, I was transferred to a room for my overnight stay. I hoped that would be the only issue, but it was not long after that I realised I was unable to pee, a complication known as postoperative urinary retention. This required the placement of a foley catheter, a procedure that requires you to spread your legs while betadine is used to cleanse the area before a thin plastic tube is inserted into the urethra and up into the bladder. Being a teenager, I was self-concious about having to do such a thing. Strangers looking at your vagina is something very few, if any, teenage girls would be comfortable with. 

     I had four more major surgeries after that, with postoperative urinary retention every time. Two of those surgeries had me in the hospital for nearly a week each, which led to more awkward and uncomfortable body moments. Catheter checks, bedside commodes, and a shower with a nurse present were some of the more memorable. Little did I know that the embarrassment I was suffering then would lead to an overhaul of my self image. When you have doctors, med students, and nurses checking on you every hour for 5 days, you get used to it.

     After those 4 major surgeries, as well as countless other exams and echocardiograms, I found that I no longer hesitated or felt embarrassed by doctors and nurses examining me. I realised that I had become comfortable in my own skin. I no longer looked at models in magazines as the ideal. Sure, I had cellulite, stretch marks, scars, and fat, but those didn't matter anymore. I was just happy to be breathing, living. My life has changed considerably since my diagnosis, as I am now disabled and find it hard to function on a daily basis, but I'm still alive. It's no longer a crisis that I'm a little chubby. I have embraced every inch of my body as a part of who I am, and that there are far more important things in life than being skinny. 

     So there you have it, ladies and gentlemen. The media will try to tell you that you have to be skinny and flawless to be beautiful, but you're already beautiful because you are alive, and life is beautiful. We all have flaws, from the regular folk to the celebrities, no one is perfect, regardless of what the media tries to tell you. So go makeup free, wear a bikini, wear your scars like badges of honour from the battle that is life. Whether you're skinny, fat, or in between, you are gorgeous as long as you are living your life, and no one can take that from you. Step outside your body image comfort zone, breathe deep, look in that mirror, and tell yourself you are one of a kind, and that there will never be another you, and that you're happy in your skin because of it! 

     Share the body positivity, complement someone who looks like they're having a rough day. Help the younger crowd by teaching or showing them that the media alters reality to show you what they think women should look like, the ideal body. There is no such thing, because we are all unique! Oh, and just in case you think you're unattractive, just remember: we all have different tastes in regards to body type, and so-called "fat" and "ugly" people are just as likely to find someone who loves them just the way they are, and more so if you've got self confidence! 

Keep your heads held high, you're beautiful! 

Monday, February 3, 2014

Product Review: Gillette Venus Embrace Sensitive

To all my zebras out there, listen up! 

I was recently sent a new razor by Gillette to test out*. The Gillette Venus Embrace Sensitive is targeted towards those of us who have delicate, easily irritated skin. Here's what the product page has to say about this razor:
"The perfect match for sensitive skin, experience a closer shave and less irritation* with 5 curve-hugging blades and 8 times more glide boosters. Discover why Venus is the #1 razor brand used by dermatologists.
  • Protective Ribbon of Moisture with 8 times more glide boosters and a touch of aloe for glide*
  • 5-blades spaced closer together for a close shave and reduced pressure per blade**
  • Dermatologist tested for sensitive skin
  • Easy-to-change cartridge
*vs. Venus original 3-blade razor"

Now, I could just tell you it's a good razor and leave it at that, but I'm not going to. I promised in receiving this product that I would review it truthfully. The truth? I LOVE this razor.

I took it straight out of the package and into the tub. The moisture ribbon is unscented, and it definitely does its job. All I had to do was dip it in the water and go, no shaving cream required. I got an incredibly close shave, my skin was soft, and I didn't end up with any nicks, bumps, or razor burn. If you have sensitive skin and have had bad experiences with disposable razors in the past, I urge you to give this one a try.

*This product was sent to me by Influenster for my honest review.