Online Support With A Chronic Illness - Rare Disease Day

Hiya!! This post is about something thats very important to me.. It's also rare disease day today so it fits in nicely.

You may not all be aware but I have 3 chronic illnesses called Ehlers Danlos Syndrome, Postural Tachycardia Syndrome and ME/Chronic Fatigue Syndrome - Click links to find out more. I was extremely unwell but I seem to have been able to turn my life around pretty drastically throughout 2014. So I try to force myself to live and act as normal as possible now, with the help of medication.. which I do prefer as I don't like my illnesses to defeat me. But I've been struggling lately, so I feel this was the right time to write a post like this.

I've been in two minds about posting about my chronic illness online, as I've received hurtful comments in the past about posting how I'm feeling and updates on my health. But in other ways it's been such a help to my life. I've also read and heard about the amazing help, positivity and hope speaking to others online has given them. I've heard of many stories where people feel extremely alone with their illness, and by joining online support groups they've found hope where there was once fear, worry, loneliness.

When you're chronically ill, especially when that illness is rare. Its hard because not many people can understand what you're going through, you truly do not know how hard living with a chronic illness is unless you're going through it yourself. This leaves anyone suffering feeling alone and very isolated. Which then can lead to depression and anxiety. By joining support groups on Facebook or searching for your illness tag on Instagram, you can friend/follow people going through the same things as you. Seeing how others cope with their symptoms, being able to speak to them too share advice and offer support really helps someone who is in a bad place. You can talk to family and friends about the same things, but as much as they can help you, nothing beats speaking to someone who knows exactly what you're going through.

In my experience speaking to people on Facebook, Instagram and Tumblr hasn't only just helped me learn to deal with my symptoms and too feel less alone. Its also helped me find a diagnosis. I was firstly diagnosed with Ehlers Danlos Syndrome but I was having unexplained heart and nervous system related symptoms. I had no idea what was causing it, but by posting online people with EDS reached out to me and told me it sounds like Postural Tachycardia Syndrome, which is commonly associated with EDS. Without me sharing my health issue's online and having the advice of others, I could still be undiagnosed and suffering quite badly from those 'unexplained' symptoms.

(p.s I'm no way encouraging you to self diagnose, if someones suggested an illness to you never assume you have it until a medical professional has diagnosed you)

I've also gotten to know some of the most amazing friends too! I think this is one of the perks of being chronically ill. Because if I wasnt I would have never spoken and got to known some of the amazing, kind, helpful and down to earth friend's I have. They're always there to help. Which is great, they also don't judge when you come up with the most random questions about your new unexplained symptoms. 99% of the time you'll get a reply "omg I get that too" and all of a sudden you no longer feel like the only person in the world with this issue. I love the girls I've gotten to know over the past few years and I'm hoping to meet some of them this year.

So if you have a chronic illness I seriously advise you to have a look online to find support for your illness. It could completely change your outlook on your life. I'm so glad I searched for other's with EDS as if I didn't I would be in a completely different situation as I'm in now. And if you don't have a chronic illness please don't judge other's for writing their story or speaking openly about their illness online.. Its helping them In a way you couldn't even imagine.

Also, in honour of Rare Disease Day please be kind and loving to anyone you may know suffering with a rare disease, not just today. But everyday <3

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Nicole 

Xoxo