Chronic Pain, Disability, Disability Awareness, Ehlers-Danlos Syndrome, health

Ehlers Danlos Syndrome From an Outsider’s Perspective – A Series

There’s a common misconception that EDS only affects those who are actually suffering from it but that isn’t true. Because EDS is all encompassing, it has an impact on everyone around us.

I decided to start a new series on my blog, exploring the different perspectives from people in my life. In this series, you will hear the thoughts of my friends and family members. Some of the guest posts will be from people I lived with at University, others I grew up with, but the one thing they all have in common is that they all mean everything to me. 

A huge thank you to every single person that has got involved in this, I know that some of you aren’t a massive fan of sharing your thoughts on the internet so the fact that you agreed to do this for me means so much.

So, here goes, the first instalment of my new blog series…

It felt only natural that the first guest post would be from my mum, my biggest supporter in this rollercoaster of life. My mum has been a part of this journey from day one and as you’ll read later on, we have both had to learn everything we know about EDS together as neither of us were given any support at the time of diagnosis. The place I am at now, with a multi-disciplinary team of doctors looking after me is down to the support my mum has provided and her absolute determination that I would get the support I needed no matter what it took.

Thank you, Mum for everything you’ve done and continue to do for me!

My Mum’s perspective:

Name:

Nikki

Relationship to me: 

I’m your Mum

Had you heard of Ehlers Danlos before I got diagnosed?

 No

What is your understanding of what Ehlers Danlos is? 

I have learnt with Lauren along the way, from the beginning thinking it was just joints and skin related to realising that every part of the body uses connective tissue, which is faulty in those with EDS so problems and therefore multiple health complaints are common. I know that for EDS sufferers just standing up causes immense pain, which we just take for granted.

What do you think an invisible illness is?

An invisible illness is one that to the outside and other people you look and act entirely normal despite how you are feeling on the inside. This leads to abuse (when parking in blue badge spaces) and people thinking you are faking it which is totally untrue.

How does Ehlers Danlos affect me?

EDS affects Lauren in so many ways. From joint issues, major knee dislocations, subluxations of her hips, shoulders, ankles and fingers, back pain, neck pain, headaches, chronic cough, stomach issues, heart issues and possible POTS and IST, Eustachian tube dysfunction affecting hearing and general body pain.  It also causes her exhaustion, depression and anxiety.

What is it like having a family member with Ehlers Danlos?

I wouldn’t swop Lauren for the world!! We just make adaptations when we need to.

What is the hardest part of having a family member with Ehlers Danlos?

As a mother the worst part is not being to take the pain away and not knowing what the future holds for her. I am powerless to help but do everything I can.

What is the best part of having a family member with Ehlers Danlos?

Lauren in general! Her smile, her sense of humour, her determination to succeed against the odds, the way she never uses her health as an excuse for anything.

What do you wish other people knew about Ehlers Danlos?

I wish people could see beyond the mask and how much pain people with EDS are in. More awareness will help this.

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