Invisible Disabilities Week

Oct 22, 2021

* This post is written by one of our volunteer content creators. *

You can see: my wheelchair. You can't see: my chronic pain, migraines, tremors, muscle stiffness, exhaustion, brain fog, memory issues, poor balance, vision issues, autonomic dysfunction, Autism, depression, photophobia, fatigue, bowel issues, dodgy immune system, veins that collapse on sight of a needle, intracranial hypertension, I'm sure I've forgotten some...not all disabilities are visible.

This is a post I made on December 4th last year and it gives a pretty good summary of the medical challenges I face on a daily basis; most of which you cannot see and unless I’m having a really bad day I can pretty much hide all of them, other than needing to use my stick or wheelchair to get around.

However this #InvisibleDisabilitiesWeek I’ve been struck by how little we talk about the mental fatigue, emotions, stresses, routines, appointments, medication management and other factors we have to manage. All things which are so often overlooked when we talk about our invisible disabilities, as we’re so desperate for people to understand that just because we’re smiling it doesn’t mean we’re not in pain or struggling with other symptoms, we’ve just learned to function alongside it otherwise we wouldn’t ever get the opportunity to engage with the world.

I, like many people with invisible disabilities, live with chronic illness which means that people outside my home only ever see me at my best. It also means that I live with a constant state of mental fatigue, short term memory issues (made worse by pain medication), and general fatigue, meaning I spend more time than most people sleeping. On top of this basic level of mental fatigue you then have the addition of managing a schedule of appointments from different departments at different hospitals, along with different medications that have to be taken at different times of day and by different means (something common across many people with disabilities or chronic illness). This requires a lot of logistical planning and coordination which can be particularly difficult when your brain is already struggling with keeping track of whether or not you’ve had breakfast today.

Emma laying in bed next to her laptop.

Another unseen pressure is the uncertainty we often face around our disabilities and/or our chronic conditions, for many of us our conditions, though chronic, are still dynamic and so vary day to day and can also still deteriorate over time. So we’re often managing anxiety and worries about upcoming appointments, the results of which will determine the direction of the next stage of our journey with chronic illness. It’s these stresses and strains on top of managing the physical side of our ‘invisible disabilities’ that I think remain almost double as invisible. Because even when we have awareness weeks like this one we primarily talk about our physical symptoms, and rarely about the mental struggles that come with them. This week my carer came to see me with a cold, whether or not I caught it from her, something caused me to crash out for 4 hours in the afternoon, as if someone’s flicked a switch and I went to sleep sat up in my profiling bed with my laptop on my lap. This is how I woke up 4 hours later, with appalling neck and back ache.

This is the true reality of invisible illness, it’s being totally wiped out by a cold that’s given you a slightly stuffed up nose and absolutely no other symptoms, but your body fell asleep before you had a chance to get your bed flat and put your laptop down. It’s being anxious because you know your next eye test could be the deciding moment between whether or not you need to discuss surgical intervention with your consultant to protect your eyesight. It’s being exhausted from trying to keep track of hospital appointments from multiple consultants in at least 3 different trusts and having at least 7 hospital numbers due to past treatment in others.

It’s not having been able to wash your hair for two weeks, because the times when you’ve had the energy haven’t coincided with the times your carers have been with you. It’s being emotionally exhausted and wanting desperately to be there and respond to your friends, but just not having the energy or the capacity to do so and therefore feeling even worse than you did before. This is the true reality of invisible disability, no shiny photos of me dressed up and looking ‘normal’ and then a photo in pyjamas with a nice tagline saying ‘still disabled’ over both, just the raw reality of real life.

You can see: my wheelchair. You can't see: my chronic pain, migraines, tremors, muscle stiffness, exhaustion, brain fog, memory issues, poor balance, vision issues, autonomic dysfunction, Autism, depression, photophobia, fatigue, bowel issues, dodgy immune system, veins that collapse on sight of a needle, intracranial hypertension, I'm sure I've forgotten some...not all disabilities are visible.

However, before I sign off I want to add that although I have written this post to  highlight the challenges of life with chronic illness and disability, it doesn’t mean I live a miserable, unfulfilled life. Whilst I've adjusted and learnt to live within the current capacity of my body, I also make a point of living the best life I possibly  can with the energy I do have. One of the most positive and valuable things I do with that time is to volunteer with Access Your Life! Over a year ago Lauren reached out to me asking if I’d be interested in writing blogs and reviews and although it was something completely new to me, I decided to take a leap of faith and it’s one of the best things I could have done. It gives me the opportunity to give something back to  the community that has given me so much support since I became unwell; hopefully offer some support to others in a similar situation.

So life isn’t all lows and stress, but there is a constant mental load associated with  managing and living with chronic health conditions. which sometimes can be more of  a challenge than the physical symptoms themselves.  It’s something we need to be  more open about and ensure we speak about the mental impact of chronic illness as  well as the physical symptoms.

Emma x

A blue banner with information on the writer of this blog - Emma! Along with an image of Emma standing in front of a cherry blossom tree. She is wearing purple glasses, a navy blazer and smiling directly at the camera.

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