What my Invisible Disability Means, Every Day

It’s invisible disabilities week this week (October 17th – 23rd 2021) and, as I’m sitting here drinking my morning coffee after seeing the kids off to school, I’m thinking about how much my visible disability actually hides the fact that so many of my Multiple Sclerosis symptoms actually go unseen.

It is easy to look at a person with mobility difficulties and think, ‘oh they can’t walk, it must be difficult for them to get around in a place that’s not very disabled-friendly’.  But I wonder if people actually realise the pain that can come with mobility difficulties? I use two crutches or a mobility scooter or wheelchair daily and, yes, it is a hassle trying to get around in places that have not been built for someone who doesn’t have two legs that work. Inaccessibility undoubtedly does frustrate me, but nowhere near as much as living in constant pain and the struggle to perform everyday tasks (such as getting my trousers on) does.

What my Invisible Disability Means, Every Day

My invisible disability means…

that I get tired and stressed, just by getting dressed. I can’t dress easily, particularly my lower half. The other day, I decided to wear a dress with tights. It took me 20 minutes just to get my tights on due to my spastic left leg not wanting to bend. Yes, this is because of my physical disability but people don’t know the stress that goes into getting myself dressed every day. Hence my love of joggers!  I remember when getting dressed was not a stressful and tiring experience.

My invisible disability means…

that I need to have a nap every day just to get through the afternoon. Fatigue is something that I, and many others, live with every day. For me, fatigue is like having sandbags attached to all my limbs. Can you imagine carrying sandbags everywhere that you go? As my fatigue increases, my head becomes more and more full of cotton wool and the only way to clear it is to rest for 30 minutes.  The rest doesn’t fully get rid of the sandbags and cotton wool but does allow me to get through the rest of the day a little bit more easily. Think of it as a battery – my battery drains to empty, the 30-minute rest charges it up, but never to 100%.

My invisible disability means…

that the reason why I stopped working in the NHS couple of years ago is not because of my physical walking problems but because of the ‘cog-fog’ that I suffer from. It’s that cotton wool feeling again, it made it difficult for me to find my words (not very helpful when you’re a speech and language therapist) and feel organised enough to manage a full caseload and also a team of people.

My invisible disability means…

that I can’t always do the things that I want to do. I might want to go out for the day with my friends and then out for a meal at night but, I know that if I have other plans for the following day, I’m going to have to pick and choose which one I decide to do. Otherwise, my cog fog, fatigue and chronic pain will floor me for days afterwards.  As a parent whose children still rely on her, this isn’t an option.

My invisible disability means…

that I have chronic pain that you can’t see. Pain isn’t something that I have always dealt with in regards to my MS but, as my condition becomes more advanced, the pain that I have my spastic legs and crutch-holding arms and shoulders is there daily. I am on a host of medications and use alternative remedies to help this.

My invisible disability means…

that I can’t always be the person that I want to be, the person I used to be. I want to have the energy to try new things, to drive and visit my friends a few hours away and, hell, just to get through my day doing all the things on my ‘to-do’ list.  When I do get things done, it makes me feel proud and organised.  When I don’t get things done – even though I know it’s beyond my control, as someone with an invisible disability – I feel disappointed in myself. I can’t help it, and I would tell anybody in my position to not worry about it, that it isn’t important. But the thing is, being an active and organised person who achieves things is important to me.

My invisible disability means…

that my mental health is just as important as my physical health. As the above illustrates, the invisible difficulties associated with my MS are just as ‘disabling’ and life-changing as the physical problems that I have.

How Do We Raise Awareness of Invisible Disabilities?

The thing about having a condition that is diagnosed and shows itself after a period of being ‘normal’, for want of a better word, is that I remember what it is like to not have a disability. And I remember having very, very little knowledge about hidden and invisible disabilities.  I never really heard about them… or maybe I didn’t look? The hope is that people will start to learn more about hidden disabilities and the impact they can have on those who have them, but the difficulty is ensuring that the message goes out. Not just to those that have them and their loved ones, but also to the wider community.

How do we do this? I think it’s something that needs to be built into the system– from school up. According to one site, 1 in 5 people in the UK has a disability, with 80% of those having an invisible disability.  So chances are our children might be one of those people, if they’re not already!

My children have health and well-being classes at their secondary school, couldn’t awareness be factored in there? Shouldn’t every workplace have some awareness and training around supporting those with hidden disabilities?  Wouldn’t it be nice if TV programmes had more characters in them who have hidden disabilities?

The Sunflower Lanyard Scheme is a globally recognised symbol to people and businesses that someone wearing the lanyard may need extra time and/or support:

Wearing the Hidden Disabilities Sunflower discreetly indicates to people around the wearer including staff, colleagues and health professionals that they need additional support, help or a little more time. Since its launch in 2016, it has now been adopted globally by major airports and venues and in the UK, by many supermarkets, railway and coach stations, leisure facilities, the NHS, a number of police, fire and ambulance services, and an increasing number of small and large businesses and organisations.

Hidden Disabilities offer training and support to businesses about invisible disabilities and the chance to purchase a sunflower lanyard for yourself.

We still have a long way to go in terms of supporting those with disabilities – both invisible and obvious – here in Britain, but it is hoped that schemes such as this, plus the voices of people like me will be heard more loudly as time goes on.

Love and light