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.
I came across this fantastic list of guidelines for how to live successfully with ME and just had to share it. So here they are, the 11 Rules For Having ME Successfully:
* Do not consider having M.E. unless you have a downstairs toilet.
* In order to have M.E. successfully you should acquire a cleaner, gardener, cook and a general handyman. If this is impossible, you should find a rich, devoted, non-talkative partner with few outside interests.
Who am I? it is important to reflect and decide who you are in life, your dreams and goals, your passion and purpose. But when you are diagnosed with a severe chronic illness it can become a bit blurry.
When you can no longer do the job or hobbies you used to do or think and learn and read the way you used to, it can seem like all those plans you had for your life are a distant memory, an impossibility...
The truth is that although things are very different now, it's still possible to find joy and meaning in every day and even discover or fulfil your purpose.
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.
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 often join in and share various ME awareness pictures during that hour.
Below you will find the graphics I shared during the last ME Awareness Hour. 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.