Five things I’ve learnt about living with a chronic illness

Blogtober Day 5

As part of Blogtober, I wanted to take the opportunity to raise awareness of those suffering from a chronic illness. If you didn’t know, I have Ehlers-Danlos Syndrome Type 3 (EDS). Let’s start with a bit of background – I’ve had EDS since I was born however it wasn’t until I was 17 after numerous broken bones, three operations and lots of medical mysteries that I finally got diagnosed.

As part of my EDS, I suffer from chronic fatigue as well as pain. If you met me on a good day, you’d not even tell. That’s one of my strongest skills, disguising my EDS. In fact, I’ve spent years trying to disguise my EDS in the worry that I would be admitting defeat to the condition or that people would see me differently. In reality, by being open about my disability, I am doing neither of those things. I am just being realistic and authentic.

1 – One of the biggest lessons that I’ve learned about having a chronic illness is that sometimes, it’s totally okay to be selfish. I’ve never been someone to cancel plans or ask for them to be changed because of me but recently, I’ve come to accept that sometimes, that has to be the case. Sometimes, I’m so tired or in so much pain that all I want to do is snuggle up in bed with a hot water bottle and not move. I understand how annoying it is for someone when a plan is changed last minute but if it is going to help my health then this is what I need to prioritise.

2 – You never truly know what is going on in somebody else’s life. There are so many people, like me, who try to disguise their disability or chronic illness. So next time you call somebody ‘lazy’ or ‘moody’ please just take the time to think about what could be going on for them. For all you know, they could have spent the night awake from the excruciating pain – Trust me this a very regular occurrence unfortunately. Looks can be very deceiving and with a full face of makeup, you’d sometimes struggle to know I was running on two hours sleep.

3 – Accepting help is okay. It doesn’t mean that you’re weak or incapable. It just means that you’re lucky enough to have somebody that loves you and cares about you and wants to make your life a little easier whenever possible.

4 – Mixed emotions are totally normal. Since my diagnosis I’m pretty sure I’ve felt very emotion. I’ve felt angry and questioned “why me?”. I’ve grieved for the future that I thought I had which has suddenly changed. I’ve felt grateful that compared to others, I am so lucky. I’ve felt determined that I would not let EDS define me. I’ve felt intense sadness. This rollercoaster of emotions is completely normal and is something that so many people go through when suffering with a disability or chronic illness.

5 – *Cringe alert* My friends and family are amazing. This one is the most important – I truly believe that if it wasn’t for my amazing friends and family, my condition would be so much worse. I have already overcome so many hurdles and continue to impress doctors with my progress. But, if I didn’t have such a supportive network around me, none of this would have been possible and I dread to think how different my life would be.

EDS

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