I’m Georgiana, I suffered a stroke that has left me with left side weakness, both my arm and leg have been affected, I walk with a limp and my arm curls up, being unable to straighten it. As well as my short term memory, and when I’m tired I lose words, unable to verbalise what i am thinking.
What I am going to share with you today is potentially nothing new. After all, you face health and disability challenges everyday, but today I want you to hear what I have to say with fresh ears and the depth of understanding that comes from lived experiences.
We all know what it is to be tired and to be exhausted at the end of a long day. But I want you to imagine for a moment, what it is like to wake up knowing you don’t even have the energy to start the day… let alone get to the end.
Today I want to make a case on behalf of all those who suffer from chronic fatigue related illnesses, that fatigue should be treated as a disability. While it’s intensity may vary day to day, it’s ability to debilitate and reduce overall quality of life is every-bit as severe as physical conditions.
To illustrate this I want to tell you part of my story.
When I was 22, I suffered from a life altering stroke. A stroke which stole much of my youth and left me learning the basics of life from scratch. Things you (and I used to) take for granted. Simple stuff, like eating, walking and even getting dressed.
I am not sure if you have ever broken your dominant arm and had the experience of trying to do everything with the other hand, but people tell me it is exhausting. The amount of extra effort your brain needs to go to just to write, txt or do up a zip is crazy and frustrating. Now think about this multiplied by a x1,000. This is something like the experience of recovering from a stroke.
When you have a stroke people can understand it. They know what it does and what happens. It is a brain issue with obvious tangible physical impairment.
However, what people don’t understand is when you have the same amount of exhaustion without the external physical signals. This is the heavy burden, that people with fatigue related conditions carry daily. Their bodies and brains are exhausted. This exhaustion is often due to autoimmune conditions. Conditions where their bodies are tearing themselves to bits. Rather than the immune system fighting against infections and other common illnesses there immune system is attacking the body’s healthy organs in an act of civil war that leaves little energy for anything else.
But for now I would like to share a little more about me… my own illnesses, that is my internal civil war on a daily basis.
- 1990 — I contract Hepatitis B, which leads to liver disease, while being in a Romanian orphanage
- 2002 — I am 12 years old and diagnosed with SLE lupus, an autoimmune illness, which attacks my own immune system causing damage to all my organs in my body
- 2011- I am 21 and underwent valve replacement open heart surgery and a lifetime of taking blood thinners.
- 2012 — I am 22 when I suffered my stroke, which left me with left side weakness, and a brain injury and a lifetime sentence.
- 2015 — I am 25 years old and was diagnosed with Fibromyalgia, a chronic pain disorder.
- 2017- I am 27 and was diagnosed with FND, functional neurological disorder, usually caused by stress and commonly referred to as brain freeze and or seizures.
I may have these obstacles to overcome on a daily basis, BUT, underneath I am just like you. I have hopes and dreams. I want to contribute to making the world a little better than it is now. To not be a burden. But rather to thrive, contribute and help others to do the same.
My illnesses don’t define who I am. I am a published author, blogger and motivational speaker, and I like to be quirky and fun! Have you seen my hair and my outfits!
These might sound like a lot to deal with, but surprisingly, the one symptom that I know to be the most debilitating, is fatigue.
One of the most helpful ways of understanding fatigue is the spoon theory developed by Christine Miserandino, who was out one night with a friend, and only had spoons to illustrate the effect of fatigue. I begin the day with 15 spoons. I wake up, make my espresso coffee = 1 spoon Eat breakfast= 1 spoon. Get dressed= 2 spoons
Feed Annie my kitten= 1 spoon Check my emails and reply, 1 spoon, and so it continues with each task.
Our little requests for support may seem silly or petty, but they are important. For example, I may ask you to make me a smoothie, which may seem like an easy task. But the reality is that on a bad day it uses up one of my spoons of energy. A spoon which I’ll need later in the day.
People who don’t have autoimmune disease, do not need to think about this constant rationing of energy throughout the day. For me, there are days where I only have 8–10 spoons where I have to take a ‘rest’ day. A day to try to and replenish my spoons. And just like you, I still need to save energy for work, spending time with loved ones or just starting the next day with something in the tank.
One misconception that I have experienced is that when I have a ‘good’ day, with 15 spoons or more, is that I will have a ‘good’ day the next day. However, on those good days people with fatigue often need to store the ‘extra’ spoons for another busy day where the spoons are needed.
It is important that you hear us when we say ‘we don’t have the capacity to complete a certain task or if on the day you are rostered to help us, we ask for it to be a rest day. We know our own bodies better than anyone and we intuitively grow in our understanding of what we need, what to eat and when to rest.
Even though I like to be independent I still require your support. Support in my case is quite unique. For example, I don’t need to be taught how to do anything. I am already capable. Although while capable, I still require support, because of the compounded effects of my internal civil war and the resulting levels of debilitating fatigue I experience. In this space transport and home help are potential life changing considerations for people with fatigue related illnesses.
As you can hopefully understand, people with fatigue need your help. We need your help, not only to get through the day. We also need your help in enabling us to achieve all we aspire to, hope for and dream of. To make the world a little better for everyone.
Chronic illness related fatigue deserves to be treated as a disability. It is already hard enough to carry an invisible burden. People with fatigue need your help
[QUESTIONS — make up question cards)
Take Home Action Points Hopefully you have your pen ready, because here are my x4 take home action points.
- Learn and be an advocate for fatigue to be considered a disability.
- Be considerate with your questions and ask rather than assume.
There are some questions that are helpful and some that are not.
Here are examples of unhelpful questions and comments:
- ‘oh you look well’ and then assuming this means we have additional capacity, while internally our bodies are working hard against itself.
- Other comments like, ‘i’m sure you can push through the tiredness’ or ‘you spend ages in your room by yourself’ .
- And questions like ‘ what’s wrong with you?’
And here are some examples of Helpful Questions:
- ‘how are you doing?’ so we can say in our own words how we are, rather than just assuming we look good, so we must be well.
- What is your capacity for today?
- How are you going at balancing your wants and needs in life?
3. Use initiative to build the capacity of the person you are supporting. For example, if we say we don’t have much capacity or many spoons, try to use your initiative and see what needs to be done… what will make our life easier later on in the day for us.
4. Educate yourself.
Learn more about living with chronic illness and the constant tiring shadow of fatigue which accompanies many of them. And,
- watch a Ted Talk, “The Hell of Chronic Illness” by Sita Gaia.
- Or if you would like to know more about my journey — You can purchase my autobiography, “My Beautiful Trauma” on Amazon and subscribe to my Blog, which is about my life living with Chronic Illness.
Thanks for being here today. Thanks for caring and for reading with fresh ears.
The key thing I’d like you to take away from this is that fatigue is not laziness, it is a real disability in its own right and should be taken seriously when supporting people with it!!
The small things you do to support us really can be life changing for us.
Thank you so much for your time.