Friday, 4 September 2015

Chronic Illness Sufferers Be Heard: #SufferingTheSilence

Suffering the Silence is an online community for people living with chronic illnesses to share their stories. They are an amazing movement that are breaking the silence by giving sufferers a voice and a platform to tell others what it is like to live with their condition/s.
As soon as I read about #SufferingTheSilence here, I knew I had to get involved. Spoonies all over are taking pictures covering their mouths with their condition/s written on their arms and a paragraph or so about living with a chronic illness.
Here's my story...

I've been in chronic pain for fifteen years, spent six years being told it was all in my head and nine years coming to terms with being disabled. Unless you see me regularly, you wouldn't know the daily battles I fight, each day is different, some a lot worse than others. I take quite a bit of medication; painkillers take the edge off but I live my life hurting and a lot of the time broken, mentally and physically. My joints dislocate and sublux frequently, I tear muscles and ligaments like it's going out of fashion, I have all over spasms that I can't control which have taken up residence in my face, I have problems with my internal organs, I can't regulate my temperature, my blood pressure is all over the place, I faint, suffer from anxiety and bruise from the slightest touch.

Having and invisible illness isn't easy and people can be cruel; most of the time it's because they don't understand and are too afraid to ask questions. I'm always willing to talk about my conditions and educate anyone who is open to learning.

My disability is only one part of me and although I have to plan and pace every move I make I know it has made me the strong, determined person I am today. I’d love to spend a day without pain but I have accepted that this is my life and I wouldn’t be me without my conditions. Share your story with #SufferingTheSilence

Here's what my wonderful friend, Natalie had to say about her conditions...

I've been through a lot in the past 5 years. Having the conditions I have isn't always easy. It's a pain in the arse sometimes. I don't always have control over my own body, I have fits, anxiety, spasms, pain, numbness, dislocations & subluxations. I used to find it really hard & scary to deal with and sometimes I still do. Some people just simply didn't understand, including me for a long time, because I looked 'normal' to them, some even used my illness to try & make themselves look like better people. You can't change the naivety of people in this world. You've just gotta be you.
I used to find it embarrassing & felt like people would judge me if I said I couldn't do something or needed help. And I hated burdening people with my problems but recently I've come to accept & embrace my illness. It's ultimately what's made me who I am. I wouldn't have met some incredible people who I now get to call friends. I wouldn't have learnt about the strength & voice I have to help, support & educate other people & myself. I am unique but I'm not alone. ‪#‎sufferingthesilence‬ JOIN THE MOVEMENT

And my other incredible friend, Emma...

I was diagnosed around 10 years ago. I used to run competatively, trampoline and walk long distances. I got to the point where I could hardly walk because my joints hurt so much and I had to give up all my sports. I have shoulder dislocations and pain in most of my joints all the time. This has really sucked but I've met some of the most amazing people through this condition and have learnt so much about my own body and how to try and gain control of my muscles. It is not all in my head but because it is an invisible illness, you will probably not see me struggle with it. It is ok to talk about, to ask questions and try to understand. It's something I deal with every day but it is not who I am. To make life just a bit easier for EDS sufferers, we need to raise awareness.

If you read my blog often, you'll know how important raising awareness is to me. If one person looks up EDS or asks what it stands for, Nat, Emma and I can educate them and hopefully they tell others. It has to be okay to talk about chronic illness, people have to ask questions, we want you to know about it. Granted, it's not always easy discussing it but we don't want to suffer in silence, we want you to know that even though we look okay, we're not feeling it. Don't ever assume.

I was lucky enough to chat to #SufferingTheSilence author and co-founder Allie Cashel, who told me about the Book Tour and its one stop in the UK. On the 10th October 10:30 am - 3 pm there will be a conference at the Gresham Centre, London, tickets cost £21.15 and each attendee will receive a copy of the book Suffering in Silence: Chronic Lyme Disease in an Age of Denial.

Spoonies, get involved. 


  1. Oooh totally getting involved if I can find a pen. Might just sharpie it on. All 3 of you are gorgeous and so strong. I don't know how I would have coped without the support and friends I have found online. Keep being awesome and raising awareness
    Beth x
    Beth x
    Mermaid in Disguise

  2. LOVE Suffering the Silence. I shared my story on there a month ago and I feel passionate about how they are trying to change people's ideas on invisible illnesses. Glad you could be a part of the movement too!


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