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

Ehlers Danlos Syndrome From an Outsider’s Perspective – Akua

This week’s guest post is from one of my closest friends, Akua.

Akua and I went to school together from the age of 15, and at 18 we were both boarders at school, so we spent a year living 2 bedrooms apart. This means that she has been around since the very beginning of my journey to diagnosis with Ehlers Danlos and has seen all of the ups and downs of my life with chronic illness. It’s been 11 years now since we met and Akua is now firmly part of my main support system. She not only encourages me to push past my illness when necessary but she also reminds me it’s okay to rest, which is very much needed sometimes.

Name:

Akua

How do you know me?

 We’ve been friends since 2009.

Had you heard of Ehlers Danlos before I got diagnosed/you met me?

No, actually the first time I heard of it was from you.

What is your understanding of what Ehlers Danlos is?

It’s a hereditary disorder that causes issues with the connective tissues in the body.

What do you think an invisible illness is?

An illness or disorder that causes pain or is debilitating for the person who has it, but on the outside, or from the perception of others it isn’t obvious that the person has an illness or disorder.

How does Ehlers Danlos affect me?

Your knees dislocate a lot, you struggle with a lot of pain in your back, hips and knees. I can’t remember which parts of your body that get a lot of subluxations but that happens to.

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

I would say that the only thing I find difficult is not knowing how I can help Lauren when she’s in pain or struggling. I can’t drive, otherwise I would help her out by driving her to places, driving to help out around the house or with shopping. However, I know she likes to do things herself so I just try to be a support for her whenever she needs to talk, vent or have a laugh, or if she just needs some company. I find it hard to see her in pain but me finding it hard to see her in pain is nothing in comparison to how she must feel.

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

Just knowing how much pain Lauren feels or how she’s struggling and not being able to do anything to help or alleviate that pain or struggle.

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

Honestly, I find Lauren inspirational. I know how much pain she is in and how hard things have been and how it has affected her mental health and yet she keeps going. She has more strength than more people I see and she is so driven, and legit a blessing to have in my life. She is amazing.

What do you wish other people knew about Ehlers Danlos?

I think people need to know that although it is a condition that you cannot see, the effect it has on the people who have it is serious and painful and can really cause a lot of problems as it has not got any specific treatments. So, where some illnesses that can be seen may have treatments and therefore can be temporarily debilitating for someone, EDS sufferers are going to have to live with their conditions for their whole life unless someone finds a treatment that works. So, instead of assuming nothing is wrong or that they are exaggerating their pain, do the research into the condition so that you have knowledge of what they are going through and have some empathy with them.

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