My brutal introduction to the world of invisible illness

In our second Invisible Disabilities Week blog, Sarah Brewer-Cook from our HR Shared Services team shares her experience of being diagnosed with multiple sclerosis and how it’s helped her expand her awareness of invisible illness in our society.

IMG 3415-279x300

Hi everyone. I’m Sarah and aside from working as a Learning Solutions Team Manager at the NHS Business Services Authority (NHSBSA), I’m also the business’ Unison disability rep and a member of our Disability and Neurodiverse  Network – a lived experience group which aims to give a voice to colleagues who have a disability, neurodiverse condition, or a long-term health condition.

In January 2019 over the course of a few hours, I went blind in my left eye. This was both shocking and scary – after a trip to the eye hospital, several MRIs, and a lumbar puncture in June I was formally diagnosed with relapsing-remitting multiple sclerosis. A chronic lifelong disability – which for many is also an invisible illness.

Multiple sclerosis (MS) affects your brain and spinal cord – your central nervous system. Your own immune system attacks the myelin (fatty tissue) surrounding the nerves within your central nervous system.

The best way to think about this is a charger with frayed wires – you could plug it in and everything works without issue, it might work intermittently, or not at all – and you get a different result each time you plug the wire in.

If your myelin is damaged, your body may not be able to send the instructions for your body to function. This damage to the myelin or ‘wire’ can cause symptoms affecting the way MS suffers speak, think, talk, walk, and see, to name a few. It can affect everything it means to be yourself.

Every day is different and for some people this may result in very visible symptoms , invisible symptoms, or a mixture of the two. No one can see fatigue or numbness.

Before my diagnosis, I had never given much thought to invisible illnesses, but over the course of last year, I had no less than three relapses which led to me having a brutal introduction to the world and impact of having an invisible illness.

It’s like being invited to a secret club you don’t want to be a part of, but you have no choice of joining. It has and continues to be tough journey, but what it’s given me is a new level of thoughtfulness and kindness.

That person who appears to skip out of their car from the disabled spot? The person having a meltdown in the supermarket? These people may have issues and disabilities which are simply presenting or not presenting at that exact moment.

What I have learned is to never assume – always be kind and helpful if you can. You never know: one day you may be the person who is suddenly presented with barriers which don’t even register to the person walking beside you.