Have you ever been out in town and seen somebody who looks perfectly healthy get out of a car they had just parked in the spot for disabled people or seen somebody on a mobility scooter park outside and walk into the shop? If you are anything like I was before I fell ill, you might think these people are faking and milking the system for benefits and attention, but you'd be wrong, just like I was!
This week is Invisible Disabilities Week. An annual awareness campaign where patients and activists share their knowledge and experience of life with invisible illness and disability. In 2015 I became severely ill with an invisible chronic illness. Before that, I was very judgemental about others when it came to illness and disability.
I believed that if people ate healthy, did exercise and avoided cigarettes, drugs and alcohol that they'd not get sick and that wheelchairs were for people who couldn't walk - the real issue was that I was simply ignorant of the realities of chronic illness and invisible disabilities. I just didn't know any better.
Chronic illness has completely turned my life and the lives of my whole family upside down, restricting me to my house and often my bed for years, but if you ever saw me outside, you'd think I was still completely healthy because my condition doesn't cause any physical deformities and cannot be detected visually. I have an invisible disability.
Although May 12 is ME Awareness Day, a global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends, many patients are too ill to leave their beds and would be lost and hopeless if not for the able bodied supporters who take their places at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few healthy friends how they could practically help our cause. So in this post I will list some ideas and links to other initiatives that would greatly benefit from any support you can give.
When I was first diagnosed with ME/CFS, I felt lost. Chronic Fatigue Syndrome was a condition I had never heard of before and my doctor didn't seem to know much about it either. What got me through was the support of other patients I found online. And they continue to be my support as the years go by! For this reason I have created an ME/CFS community online.
It consists of a few places on social media where bloggers, vloggers and other content creators with ME/CFS (and their carers) can share their content to help support the ME/CFS community better.
My hope is that newly diagnosed patients, or anybody struggling to manage life with ME, would not struggle as much as some of us have to find the support and resources available to them.
Every Wednesday the ME community comes together on Twitter to raise awareness of this debilitating chronic illness. We share recent media coverage, research news, our personal experiences and more. Making new connections and supporting each other.
I will post the graphics I shared during the last ME Awareness Hour below. I hope this will help you understand what life is like with ME/CFS. If you have learned something new or find this post might be helpful in any way, please share it or download the images to share on social media and help raise awareness.
Sandwiched between 2 hot water bottles, under layers of clothes and blankets, medicated - multiple times, in the dark with sunglasses on, my phone's screen dimmed and the blue light filter on so that I can bear looking at it for a few minutes at a time.
This was me yesterday after I had a nap on the sofa where I toppled over after lunch, in a bundle of pain and tears as the previous night's insomnia caught up with me and my body was flooded with pain in every muscle and every bone.