Chronicles of ME

This week from Sunday 13th October to Saturday 19th October is Invisible Disabilities Week.

What is an Invisible Disability?

So what are Invisible Disabilities or Hidden Disabilities as they are also known.

According to InvisibleDisabilities.org:

‘an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings,  false perceptions, and judgments.’

Traditionally our perceptions have identified the term disability with the symbol of a person in a wheelchair or someone using a crutch, or some other form of mobility aid.

However, that is not a true reflection of the vast range of conditions that ‘disability’ covers. The definition of disability according to the Equality Act 2010 is:

‘a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities’

No mention of the disability/condition having to be visible. In fact, it all seems fairly logical and simple. So why has a whole week been dedicated to raising awareness of the condition?

My Hidden Disabilities

To put some context around it let me tell you some more about my own conditions.

I have M.E (Myalgic Encephalomyelitis) and Fibromyalgia. Neither on the surface are visible conditions. The M.E causes extreme exhaustion at carrying out the simplest of everyday activities, muscle weakness and cognitive difficulties to name a few of the vast array of symptoms. No one can see the tiredness, and pain that the illness brings. In fact, more often than not, I look completely well.

So naturally, a lot of people struggle to grasp that I’m actually ill. I mean I don’t look tired so how could I possibly feel so exhausted? Surely it’s all just in my head?

To confuse matters further, I walk any considerable distance with the support of the crutch. Yet I appear to walk fine… Not to mention, ‘Shock Horror‘ the times when I have to use a wheelchair or my mobility scooter and then exit the chair and miraculously walk!

Yet my experiences are far from uncommon. The Invisible Disability spectrum can cover everything from M.E to Lupus, Migraines to Autism, Mental Health to conditions like Crohn’s disease.

People living with these conditions continue to have to fight to have their conditions recognised, to get the support they need. All because they don’t look ill, they don’t look disabled.

Not Every Disability is Visible

This week, therefore, is about raising awareness that ‘not every disability is visible’.

But they are just as valid.

And awareness of Invisible conditions is continuing to grow.

In the case of ME, the charity Action for M.E have recently released a brilliant article entitled ‘For the non-believers’ summarising scientific evidence that this condition is real, valid and not all in the heads of its community of sufferers.

Airports and Supermarkets have started to support the Sunflower Lanyard scheme which aims to help individuals with hidden disabilities highlight if they need extra support.

But we need to continue to challenge perceptions of what we traditionally view as disability and raise awareness that every disability whether visible, non-visible, mental, physical or neuorgological is valid and has a place in society.

How you can get involved and show your support this week?

• If you have a disability tell your story/share your experiences
• Share any social media posts, news stories you see to help spread and raise awareness
• Remember if you see someone using the disabled toilets, disabled parking spaces, priority seats on public transport etc and they look well. Don’t be quick to judge, they likely have an invisible condition.
• Take part in Thankful Thursday. The Invisible Disabilities Association is encouraging people to share what they are thankful for on Thursday of the awareness week.
• Be kind. None of us can truly know what someone might be going through just by looking at them. A bit of kindness goes a long way.

To read more about my journey with an invisible illness you can catch-up with my journey here