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

Ehlers Danlos Syndrome From an Outsider’s Perspective – Hannah

Today’s guest post is written by someone who means the absolute world to me, so allow me to introduce you to my best friend, Hannah.

Hannah and I met almost 7 years ago when we moved into the same halls of residence at University and she has been by my side ever since. When I burnt both my hands in first year, she literally fed me my dinner, covered my hands in cream and clingfilmed them to prevent blisters from forming.

I can honestly say I would not have been able to get through University without Hannah by my side. Whether it was making me cry with laughter, hugging me tight when I was in floods of tears, accompanying me to every hospital appointment, reminding me to eat when I was too exhausted to move or leaving me breakfast smoothies every morning to ensure I had some sort of food in me – you name it, she was there looking after me.

The worst part of having an invisible and chronic illness is the loneliness that stems from no one understanding, but I can honestly say that I don’t have that. Whilst Hannah doesn’t have a chronic illness (unless being awful at spelling counts? Seriously… she once spelt scarf as scalf and don’t even get me started on the Female/Male debacle), I know she gets it and in fact I think she actually knows me better than I know myself.

However… as much as I’ve painted her as an amazing person, who can do no wrong. Let me tell you that she is also an extremely bad influence.

Back in November 2019, I dislocated and fractured my knee cap and was put on sofa rest for 2 weeks with my leg braced from hip to ankle. My mum had banned me from leaving the house, let alone attempting to go upstairs unaccompanied, so I called upon Hannah to come and rescue me. Sure enough, 2 days after the dislocation she arrived and within 3 hours had broken me out of the house and taken me on a jolly to Tesco, where we promptly got caught by my mum (sorry again Mum…🙊).

Hannah, I am so grateful to have you in my life (that goes for Michelle and Chas too!), thank you for everything you do for me. Life with a chronic illness doesn’t suck anywhere near as much with you by my side! ❤️

Name:

Hannah

How do you know me?

We met at university, after fate brought us together in a very interesting halls of residence.

Had you heard of Ehlers Danlos before you met me?

I had not heard of Ehlers Danlos, however over the last few years there seems to be more awareness shown on different social media platforms. I am not sure if that is just because I am now aware of it, and therefore notice posts regarding the condition, or if there has just been an increased awareness in general.

What is your understanding of what Ehlers Danlos is?

My understanding is that Ehlers Danlos is a condition that affects a person’s joints, skin, bones, organs and breathing. It is a condition with many different layers, and can present its severity in different ways, such as with hyperextension of joints and scarring of skin, or the inability to heal properly. Ehlers Danlos causes fatigue and exhaustion when completing daily tasks such as cooking or going for a walk and uses more energy to complete these tasks than the average person.

What do you think an invisible illness is?

I think an invisible illness is an illness, which is unfortunately not always easily accepted in society due to the lack of external clear signs and symptoms, such as the use of a wheelchair. An invisible illness can be challenging to understand as symptoms vary from person to person, and from day to day. Additionally, individuals with invisible illnesses are often very skilled in hiding their illness due to lack of understanding and acceptance from the general public.

How does Ehlers Danlos affect me?

Ehlers Danlos affects Lauren in such a multitude of different ways. Not only does it affect her mobility such as having to wear knee braces, tape and struggling with hyperextensions/dislocations, but it also affects her skin, sleep, digestion and much more. Additionally, it also affects her confidence, worries, and overall mental health. EDS also has a huge influence on so many daily decisions ranging from what shoes should she wear to, should she take the lift or the stairs, should she make plans to be busy at the weekend knowing she will be exhausted on Monday, to should she cook or order food. Ehlers Danlos affects Lauren so much more than any of us will be able to understand.

What is it like being friends with someone with Ehlers Danlos?

I think being friends with someone who has Ehlers Danlos is much like being friends with anyone else. We don’t choose our friends based on their health, friends don’t choose each other based on anything, we just naturally gravitate towards each other. Ehlers Danlos is just a part of life and a part of our friendship. I think the key is to just listen to what the other person is going through and support them, whilst knowing that you will never truly understand what its like to have Ehlers Danlos, but that doesn’t stop you from listening and trying to find positives in every situation.

What is the hardest part of being friends with someone with Ehlers Danlos?

I think the hardest part of being friends with someone with Ehlers Danlos is seeing them unable to do the things they enjoy or the plans that they have made due to a change in their health. Its only natural to want to help your friends enjoy themselves, succeed and encourage them, but when their health is a barrier it can be hard to find the right words, which are the perfect balance between “I believe you can do it, but I know your body won’t let you” without sounding pushy and like you don’t understand.

What is the best part of being friends with someone with Ehlers Danlos?

I think the best part of being friends with someone with Ehlers Danlos is their strength. Their strength and determination to just continue and overcome challenges like working full time and battling against unhelpful medical professionals. However, its also ridiculous to say “I admire how strong you are” because in their world, they are not strong or someone to be admired as its just their everyday life, they have no option other than to be strong. 

What do you wish other people knew about Ehlers Danlos?

I just wish people were more understanding and kind. I wish there was more awareness surrounding the condition as that would begin to remove the stigma surrounding this invisible illness and many more.

What was it like living with someone with EDS?

Lauren and I lived together for 3 years at university. One of the main aspects I remember about living with Lauren in regards to her EDS is that she was always prepared, and organised. That meant actually investing in a comfortable office chair and desk to write her university assignments on, rather than slouching in her bed with her laptop balanced her legs, using her own section of valuable freezer space for icepacks in case of pain or dislocations, instead of ice cream, and having enough medical supplies for all eventualities to rival A&E. At the time I don’t think I appreciated this as part of Ehlers Danlos, but making life easier and more comfortable, whilst trying to minimise the amount of pain you feel is definitely a huge part of EDS. Although I didn’t really understand what EDS was, the simple way I thought about it was that whatever the health issue, we all need looking after, compromises need to be made and no one should have to go to a hospital appointment alone. From that mindset, Lauren and I now often reminisce about the banana smoothies I used to make her and leave in the fridge with the appropriate Hollaback Girl lyrics taped to them, and our eventful days out to the hospital. Mix that in with the usual university experience of giggling until the early hours of the morning, relentless days in the library, countless trips to McDonalds, arguing over the washing machine and her proof reading my assignments for the millionth time, I would say living with someone with EDS is pretty amazing.

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