Introductions

It took me a long time to decide if I wanted to start blogging again.

I had a blog several years ago but it was heavily centered on an old project that has since died out, and I have been very unsure about starting a new one. I’ve spent the last ten months going back and forth, talking myself in and out of doing it, and starting pages only to delete them before I could publish them. I’m not really sure what has held me back for so long. Fear of being judged or shamed for expressing my opinion on touchy subjects? Concern that my posts may be seen as attention or pity-seeking? Self-doubt? A lack of confidence? Honestly, probably all of these. It took me a long time to get here. Beyond this uncertainty, however, I find myself feeling excited. Excited to share stories and discuss things that I care deeply about, excited to connect with people who are facing similar challenges and excited to have a place to channel my thoughts and a voice to promote positive change.

I’ll talk more about the goals of this blog later, but let’s start from the beginning with the blog name and my identity in the Twitter-verse – The Bendy Biologist. The months I spent deliberating the start of this blog I also spent wrestling with what to call it. I wanted something that would help to define my identity, but would also leave people curious and wanting to know more. The term “bendy” refers to my primary diagnosis; a rare connective tissue disease called Ehlers-Danlos Syndrome. I could talk for ages about the complexity of this disease and the problems it can cause (and I will in a future post, I’m sure), but one of the defining characteristics of the disease is extreme weakness and instability of the joints. Essentially, Ehlers-Danlos Syndrome (EDS) causes defects in collagen, a structural protein that acts like a glue to hold your body together. There is a large amount of collagen located within the joints, allowing them to bend and facilitate movement, but with EDS they bend way too much. This results in hypermobility (often extreme), where joints bend farther or in directions that they shouldn’t, and causes frequent dislocations or partial dislocations (called subluxations) with even the slightest actions. Because of this, many individuals with EDS refer to themselves as “bendy”, which is where I found the inspiration for this blog name.

I stuck with this name because it gives insight into an aspect of my condition that encourages questions and offers an opportunity to educate. Every person with this disease and every person with any disability is different – some people like to share and spread awareness, while others want privacy, and both are equally valid. I have always preferred being open and honest with others and explaining things rather than being gawked at like an animal in the zoo. I find these genuine interactions preferable to hearing whispers about the girl with the dog and wheelchair and tubes, and that is part of why I started this blog.

My biggest goal is to create transparency with life as a disabled, chronically ill woman pursuing an education and career in STEM. I want to share my experiences – the good, the bad and the ugly – with the hopes of education, awareness and connection. I am unbelievably grateful to be where I am today, but that doesn’t mean the path I’ve walked (or rolled) has been an easy one, and I have no misconceptions of the challenges yet to come from both a physical and educational standpoint. I am looking forward to where this blog will take me in the years to come, and welcome anyone interested in hearing my story

One thought on “Introductions

  1. Hi Charlotte,

    WOW your blog is so great! Reading this and some of your more recent posts has been fantastic. I work for a charity that works to break down the barriers to STEM for disabled children. We have a Role Models programme to help inspire the children we work with and I think you’d be a perfect Role Model for us, if you’re at all interested! I’d love to chat to you more about this – do drop me an email on rhiannon@lightyearfoundation.org and I can tell you more.

    “My biggest goal is to create transparency with life as a disabled, chronically ill woman pursuing an education and career in STEM” – This particularly resonated with me as it is so well aligned with our work!

    Have a great day,

    Rhiannon
    Project Manager, Lightyear Foundation

    Like

Leave a Reply to Rhiannon Kearns Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s