“Vision is the art of seeing what is invisible to others”……Jonathan Swift…
As well as being an “invisible” illness itself, autoimmune disease also brings with it many unwelcome invisible visitors.
Before my diagnosis, I had never thought about illness being “invisible”. There are many conditions that fit this “invisible” umbrella including crohn’s disease, rheumatoid arthritis, multiple sclerosis, diabetes, fibromyalgia, and many others; mental illness also falls under this banner and many people living with chronic pain also struggle with depression and anxiety. Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be ‘making up’ your suffering.
One of the worst “invisible” symptoms of autoimmune disease is fatigue. It’s often described as a profound and debilitating tiredness but the main difference from just being tired is that it’s not fixable by sleep. Attacks of fatigue can occur at any time of the day. You can experience it when you have just woken up or it may come on when you’re physically busy or concentrating a lot.
For me, fatigue happens without warning. It can last anywhere from an hour to the whole day and, in some cases, longer. I am fortunate that I don’t suffer many attacks of fatigue, possibly one a month, or more if my inflammation markers are up.
However, other people suffer much more and it’s important to me to try and explain the difference between being tired and experiencing autoimmune fatigue. Since I started writing my blog most of the messages and questions I receive are about autoimmune fatigue and how I cope. A lot of people face scepticism and are accused of being lazy or moody and in need of cheering up, calming down, or a host of other dismissive judgements when they suffer this level of fatigue. It is life changing and one of the most common reasons people struggle to work and support themselves.
So, here’s my attempt to explain the difference.
In 2007 I was working as Head of Sales for a technology company I had joined in 2004. I’d been hired by the CEO and his Board to run Sales and execute against a 3-year plan to grow and sell the business. We achieved the plan and the company was sold in 2007. During the due diligence phase (the investigation the purchasing company does before completing the contract) I was completely exhausted.
I arrived at our London office for Day 1 of the due diligence straight off an overnight flight from America. I was nervous about the meetings ahead and hadn’t slept. As Head of Sales, a good deal of the scrutiny was focused on my area of responsibility and the meetings were very intense. At the end of day one we went out for dinner and I arrived home at 1am having had no sleep the previous night. My alarm was set for 5am the next morning and this routine went on for a further three days.
At the end of this period I was physically and mentally drained. I couldn’t think straight and all I wanted to do was sleep. On the last night at dinner, I had the pleasure of sitting next to a chap who was very interested in model railways. I loved my job in sales as I am interested in people and their hobbies and I enjoy learning about new things. However, after 3 hours of polite conversation about model railways I knew I had reached my limit. I needed either more alcohol (not advisable when with clients) or a very powerful energy drink to keep me smiling and neither option was appealing 😊.
When I returned home, sleep fixed my exhaustion. The next morning was Saturday, I had slept for over 7 hours and felt absolutely fine.
Autoimmune fatigue is not fixable by sleep.
When inflammation is present, your body must use energy to counteract it. The release of cytokines during the process of inflammation can produce a sensation of fatigue which completely wipes you out. It’s debilitating and stops you doing even the simplest tasks. It feels like a mountain of weight has descended on you, not allowing you to move and taking away all your energy. For me it includes emotional exhaustion, it makes me frustrated and anxious. My body and limbs feel heavy and difficult to move and all my drive has drained away. This fatigue isn’t the same as chronic fatigue syndrome, it’s a symptom related to autoimmune disease and you have to learn to manage it, otherwise it can destroy your life.
So how do I cope?
I use every ounce of willpower I can muster. When it happens, I force myself to get up and move. It takes tremendous focus to work my way through it. I don’t like to give into it; in my weird and wonderful mind, if I give in, it will get the better of me and the invisible enemy will win. Willpower is without doubt my magic ingredient.
I gave up smoking years ago and, as someone who really enjoyed a cigarette, it took a lot of failures and a lot of willpower, to finally quit. As a smoker, I made a conscious decision to forfeit the enjoyment of a cigarette in order to experience improved health and avoid an increased risk of illness in the future. This is what I do with autoimmune fatigue, I chose to fight it to live a better life.
Every day, we make decisions to resist impulses in the quest to be healthier and happier. Whether it’s turning down a second helping of chips, dragging yourself to the gym, forgoing another glass of wine our will is tested on a near-constant basis.
Exercising willpower to manage fatigue works for me. Once I have made myself move, I then do something I enjoy thereby distracting myself from the feeling of doom. In my opinion, willpower is a mental muscle that you can train. Those who can master it will have more control over living a happier and more and successful life. There is a lot of research on the subject of willpower which I find fascinating as I am always looking for new techniques to improve my determination.
Everyone we meet is often fighting a battle we know nothing about, especially those who live every day with invisible enemies and chronic pain. Some very apt words have been trending on social media following an Instagram post from someone I didn’t know, but felt immense sadness at her death – “in a world where you can be anything, be kind”
Thank you for reading and sharing my blog, until next time xxx