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thecreativezebra

young adult life with Ehlers Danlos Syndrome

My Experience with Misdiagnosis

One thing I don’t really discuss is my childhood with an incorrect diagnosis, but it’s time for that to change. I should start by saying that I may have anger towards the doctors that misdiagnosed me, but in no way do I blame them. It’s not their fault that they did not recognize a rarely known genetic disorder. I know that my doctor was doing what she believed was best for me.

For the majority of my childhood, no one believed that my pain was real. No one could see it. I was accused of faking, exaggerating, and manipulating. At age seven, I began seeing a psychiatrist and was diagnosed with anxiety and depression. Those diagnoses were accurate.

Over the next few years, I grew increasingly frustrated. I was always in pain, I struggled with basic tasks, and I didn’t understand what was happening. I tried voicing my concerns, but I was told that I couldn’t possibly be experiencing the things I was. That’s about the time that I began to self harm. I don’t know why I started self harming at such a young age; maybe it was the only way that my eight year old brain knew how to express my pain. I was placed on an inpatient psychiatric ward and diagnosed with Bipolar Disorder.

Things went from bad to worse. From the time I was eight to the time I was thirteen I was admitted to psychiatric hospitals about ten times. I was placed on many medications, all of which made me extremely ill. The anti-psychotics actually made me psychotic. I quit speaking about my pain. I even convinced myself my pain was not real.

I hit rock bottom when I was thirteen years old. I could no longer ignore the fact that I was in serious pain. I was having black outs in my vision and collapsing when I would stand up. My psychiatrist told my mother that I was faking it for attention. I was placed on a psychiatric unit once more for suicidal behavior. This time I was put on Seroquel, a medication that nearly killed me. The Seroquel didn’t help, so my psychiatrist kept increasing my dose. Eventually my little one hundred and ten pound body was on one thousand milligrams.

Meanwhile, the black outs in my vision were becoming more frequent, and I was developing tachycardia. One day my mother saw me stand up off the couch and immediately fall to the ground. When she tried to talk to me I was unable to respond: she realized I wasn’t faking. She took me to a cardiologist who suggested that I should be taken off Seroquel to see if that eased my symptoms. I was hospitalized once more and it was determined that I would be switched from Seroquel to Latuda. The switch wreaked havoc on my body. I developed a severe reaction to Latuda while also going through withdrawal from the Seroquel. I could not eat or drink and lost fifteen pounds in less than a week. I was taken completely off both medications during my hospital stay. Never again have I been put on any similar medications.

About a year later I was diagnosed with Ehlers Danlos Syndrome and Dysautonomia. After a little bit of research, I learned that it’s not uncommon for people with conditions like mine to be misdiagnosed as Bipolar.  The changes in adrenaline are often mistaken for Bipolar episodes, and “brain fog” can often look like dissociation. I also found out that high doses of Seroquel are extremely dangerous for people with autonomic nervous system disorders.

Unfortunately, accurate diagnoses did not solve all of my problems. My doctors still don’t know exactly how to manage my symptoms, I still struggle with self harm, and there are still more questions about my health than answers. At least I am finally being treated for the proper conditions.

I sincerely hope that educating doctors about EDS and Dysautonomia can prevent other people from having experiences like mine.

 

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I’m Not Laughing at Your Old Lady Jokes 

I hear it all the time. People make seemingly harmless jokes comparing me to an old lady. A friend chuckles as they comment about how I have more joint problems than her grandparents or a coworker begins calling what she believes to be “old lady names”. But why are these jokes so harmful?

There are several reasons that the jokes and comments can hurt young people with chronic health conditions. Not to mention that, making the elderly into a joke is disgusting and degrading, but that’s a whole separate issue. Many young disabled people already feel extremely isolated. Medical supply stores mainly market to people over the age of fifty, commercials for pain relief products rarely feature people in their teens and twenties, and the media seldom depicts kids and teens using canes or walkers. So as you can imagine many of us feel as if we have been cheated out of the our youth. We are still young. Please don’t make us feel as if we have missed out on a period of our lives.

EDS on TV 

As you may already know, the most recent episode of Grey’s Anatomy features a character with Ehlers-Danlos Syndrome. I don’t usually watch medical dramas, but I did find myself watching clips from this episode entitled Falling Slowly. I’m beyond happy with this episode.

Representation in popular culture is huge for the EDS community. Being featured on a popular television show is a great way to raise awareness, and as I always say, awareness is the first step to better treatment options and maybe even a cure! So many more people have now heard of Ehlers-Danlos Syndrome thanks to this episode. Maybe the next time I tell someone that I have EDS, I’ll hear “Oh, I’ve heard about that on a TV show” instead of “huh???”. Knowing that people have at least heard of EDS can be extremely validating.

As important as representation is, it does nothing if it’s not accurate. Fortunately, the creative team of Grey’s Anatomy actually met with an EDSer and did a great job portraying the condition and showing how difficult it can be to get the correct diagnosis. I was especially pleased that the effects of Ehlers-Danlos Syndrome were not minimized. They even addressed common comorbidities such as Dysautonomia. A patient putting her own shoulder back in place and having spontaneous fainting spells may sound dramatic to some, but it’s the reality for many of us living with EDS.

In summary, Grey’s Anatomy definitely has the approval of this medical zebra on their latest episode. I would like to thank everyone involved in the making of the episode from the bottom of my heart. I hope that other television shows will soon follow suit. I mean, come on, Ehlers-Danlos Syndrome is pretty far from boring.

Invisible Illness Awareness Week 

It’s #invisibleillnessawarenessweek! This is the time for us to ensure that our voices are heard and our experiences are validated (I just so happen to have an avulsion fracture on my hip now too 🙃). My condition is real when I am not using crutches. My condition is real when I’m not wearing braces. My condition is real when I’m not in a hospital. My condition is real when I have a smile on my face. My condition is real even when it’s invisible. Actually, the invisible often becomes visible if you look a little harder.

Please open your mind to the things that you don’t see.

It’s Not Always Positive

Hi, my name is Vanessa (Nessy), and I am in pain. I hate pretending that everything is fine. I’m so tired of hearing that “it’s all about having a positive attitude”. No. I don’t have to be positive 24/7. I don’t have to love my disability or see it as a “blessing in disguise”. I’m allowed to be frustrated and upset. My frustration is valid. The truth of the matter is I could poop rainbows and spit glitter everywhere, but my body would still be a wreck. I can be frustrated, but that doesn’t make me a negative person. I find beauty all around me, but I am tired of pretending that my illnesses are beautiful. There is so much true beauty in this world, and you’ll never fully experience it if you keep believing that misery is beautiful.

An Open Letter to the Kind Doctors, Nurses, and Medical Staff

To whom it may concern,

I would like to start by saying thank you. Thank you for your kindness. Thank you for your compassion. Thank you for your time and dedication. I will never forget everything you have done, and I will be forever grateful. You have made many difficult days a bit brighter and a bit more comfortable.

To the nurse working on the physical rehabilitation unit back in March: You sat with me and comforted me while I cried. I broke down after an overwhelming physical therapy session. You made me feel understood and validated. You weren’t even my nurse that day. You truly went above and beyond. It saddens me that I will never be able to fully articulate my appreciation. Thank you. Thank you so much.

To the young paramedic that rode in the ambulance with me earlier this summer: Thank you. I don’t remember much of that ambulance ride, but I do remember you. I never did see your face, but I could feel that you had kind eyes. You did your best to understand my condition. You did everything you could to ensure that I was as comfortable as possible. You gave us your business card and told us that we could come to the station to explain more about my health conditions. You made an effort to understand. Thank you.

To the emergency room nurse that tried to start my IV later that same night: You kept apologizing. You had no reason to apologize. After all, you were taking care of me. It seemed to really bother you to see me in pain. It was by no means your fault that my veins kept blowing out. I sincerely hope that you did not feel responsible for that. You were kind and gentle. I admire your patience and compassion. Thank you.

To everyone at the oral surgeon’s office yesterday: Thank you. You were all very knowledgeable about Ehlers-Danlos Syndrome. You did everything you could keep me as comfortable as possible during my wisdom teeth extraction. I woke up with pillows behind my back supporting my spine. You were all so gentle as you assisted me into the wheelchair. One of you even took notice of which joints appeared to be particularly unstable. Thank you.

I could not possibly thank everyone individually, but you are all greatly appreciated. I have had my fair share of negative experiences with medical professionals, but your kindness makes those issues seem small. Thank you. Thank you so much. Thank you for all that you do.

Sincerely,

Your patient

EDS III: NOT “just double-jointed”

They way we discuss EDS and double jointedness is harmful to many people living with a serious medical condition.

I should begin by clarifying a few things. For starters, the term “double-jointed” is a misnomer. People that call themselves double-jointed do not have extra joints. They are hypermobile. Hypermobility means that joints move beyond the normal range of motion. By itself, that is all the term means. Double- jointedness is NOT a serious medical condition. Ehlers Danlos Syndrome type 3 (hypermobility type), however, is a serious medical condition that is often debilitating. EDS III is characterized by joint hypermobility, often leading to double jointedness comparisons, but EDS is far from being the same thing.

Allow me to brush the surface of the biology of the two. Being double jointed is not a serious health problem. Most people with an increased range of motion don’t have a genetic or structural difference, but not any genetic or structural defects. It will never cause any sort of health concerns for them. It’s similar to having blue eyes is a genetic difference, but not a genetic problem. EDS, on the other hand, is a serious multisystematic genetic disorder. Hypermobility in EDS is caused by a problem with the production of collagen. Many people with EDS also have severe joint instability, which is not seen in someone that is simply double jointed. The faulty collagen of an EDS sufferer can also cause problems with the skin, eyes, blood vessels, and internal organs. EDS patients also will often have neurological disorders such as Dysautonomia. It’s also worth noting that an estimated 1 in 5 healthy people are double jointed, while an estimated 1 in 5,000 people have EDS III.

I’d like to point out that comparing Ehlers Danlos Syndrome to a party trick that a drunk person may find amusing is extremely harmful. I remember reading an article on BuzzFeed about double jointedness that casually mentioned EDS and wanting to cry. Comparing the two makes the struggles of those of us with EDS, a serious medical condition, seem trivial. Ehlers Danlos Syndrome makes simple tasks difficult and often impossible. How many people that are just double jointed live their whole lives in extreme pain? How many of them struggle to walk, stand, hold up their own head, grip a pencil, drive a car, or roll over in bed?

Learning to Love My Faulty Body

We’ve all seen body positivity posts lately. They feature people of different shapes, sizes, and colors. I find it extremely disappointing that so many of these posts about loving your body only include people whose bodies function properly. Loving your body is even more challenging when you live with chronic health problems. How are we supposed to love something that causes so much distress?

I wish I could say that I have found a simple solution, however, I still struggle with my body image everyday. Ehlers Danlos Syndrome affects my physical appearance. These affects may be subtle to others, but I am very aware of them. My sensitive and hyper-elastic skin is covered in scars and stretch marks (yes, skinny people can have them). My joints often look strange or even unsettling. I cringe whenever I look at one particular photo from my junior year homecoming dance. While I had my arm around my friend, my shoulder slid slightly out of place. It looked hideous. Also, I hate giving the “thumbs up” gesture because my thumbs hyperextend into a strange position. I hate how my health affects my appearance.

Additionally, I often find myself frustrated and angry with my body. It so often betrays me. I have so many passions, hopes, dreams, and aspirations that my body simply refuses to support. I was heartbroken when I had to quit tap dance because my ankles couldn’t handle it. I wish I could walk for long distances. EDS and Dysautonomia leave me in a constant state of uncertainty. I never know what my body will or will not be able to handle. I avoid making plans due to the fear that I will have to cancel them. None of this is any fault of my own; it’s the fault of my poor health.

So what am I doing to start loving my body? I’m recognizing that I am not my body. My body is simply my shell. I am my thoughts, my feelings, my hopes, my dreams, and my interactions with the world around me. I thank my body for giving me a physical form. I try my best to be patient with my body, for it’s doing the best it can.

photo taken by Erin M.

Words I Don’t Want to Hear

  • “But you weren’t using the cane/crutches/wheelchair yesterday”
  • “At least it’s not cancer”
  • “You’re too you to be so unhealthy”
  • “You seem so normal”
  • “Wow, I could never live like that”
  • “It can’t hurt that much”
  • “It’s very inconvenient when you…”
  • “Just suck it up”
  • “But you don’t look sick”

*this is far from being a complete list

 

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