ME/CFS: Living with an invisible illness
Table of Contents
This post is definitely not technical and probably for myself as much as anyone else.
If it helps other ME sufferers or sufferers of other invisible illnesses, or if it helps non-sufferers understand it, then it’s worth sharing.
DISCLAIMER: I am not a doctor, these are just my observations of my illness, and my recollection of medical studies I’ve read in my desire to understand and deal with the illness.
I was first “diagnosed” with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) over 15 years ago - I say diagnosed, but there is no diagnostic test for it, it’s a diagnosis of exclusion of other conditions with the same or similar symptoms.
Invisible Illnesses - What are they?
Invisible illnesses tend not to be understood by those who don’t have them and therefore there is significantly less empathy towards those who have them.
Physical injury is something tangible that people can see, understand, and empathise with. Even well known diseases such as Cancer are reasonably well understood by the general public, and again there is empathy.
Invisible illness though by its very nature doesn’t have visible symptoms.
More commonly, invisible illness is made more so because those suffering with them struggle on and don’t make a fuss, or hide away from social engagements because of how they feel and the energy those engagements consume that they may not have. Often it’s a combination of both.
ME/CFS - An analogy
Energy is a key topic with ME/CFS. We all have activities that energise or recharge us (including sleep, which is a lack of activity, but an essential recharge) and activities that consume energy. Energy can take many forms - physical, mental and emotional. One thing I’ve observed over 15+ years is that how you use energy with ME is very different.
I liken it to an energy bank account - except with ME you drain your energy funds far more quickly and replenish them much more slowly. And just like with money - being overdrawn has costly consequences.
ME flareups or relapses can be caused by physical/mental/emotional exertion, physical/mental/emotional stress or a combination of all of these. It can also be attributable to a single event/trigger or the culmination of them over time. However, there can be an element of delayed reaction so sometimes it’s not easy to identify the trigger(s) for the relapse.
So what’s going on under the hood?
Being a bit of a nerd. I’ve read various medical papers and studies on what may or may not be going on in people with ME and two key themes resonated with me and my experiences.
The first one centres around mitochondria and cellular energy (ATP) usage/replenishment. If I remember it correctly the theory goes that in ME sufferers the cells use energy more quickly and are also unable to convert energy to forms that the cells need and can use, as quickly as it is needed.
This then leads to you being in deficit of energy at a cellular level hence the fatigue/brain fog. There is still much debate about if this is indeed what’s going on in ME, but it does resonate with my experiences.
Secondly, there’s the theory that the fight or flight response plays a big part here. Normally, if your body senses danger your fight or flight response kicks in and in order to enable to you fight or to run away, your body ramps up production of two key hormones - Adrenaline and Cortisol.
These help your body deal with those situations and are normally only produced while in danger and used up during that situation. However, there’s a theory that in ME your central nervous system forgets to stop producing these hormones or invokes fight or flight when you are not in actual danger (but are stressed for example).
The end result is that rather than these hormones (chemicals) being used at time of need, they end up being stored in your muscles and your lymphatic system. This build up then leads to musculoskeletal pain, nerve pain, brain fog, fatigue and a whole host of other symptoms.
So how does that feel?
ME symptoms vary widely between sufferers, and severity can range from mild/infrequent to constant/bed-bound.
I’ve been lucky in that at my very worst I have not been completely bed-bound for long periods of time.
The end result for me personally is I can go from feeling physically and mentally fine to being fatigued, cognitively impaired, in agony head to toe and unable to do basic things for myself (like getting dressed) at the flick of an invisible switch.
Those pains can feel like my joints are on fire, like my body is being crushed or like lightning bolts shooting through the body - often all these at once.
It can stop again as quickly it starts, or persist for hours, days, weeks. It can also be very variable even within those periods of relapse.
So how can that be invisible to people?
If I feel like that I will avoid social engagements either because I haven’t the energy, the pain is too great or because to go would increase severity/duration of the flare/relapse - adding to the invisibility of the illness as other than your closest family/friends, nobody will see you in this state.
If it’s a mild relapse then I can probably hide the pain from the uninitiated as my pain threshold is higher than it used to be and cognitive impairment I tend to be able to hide in a mild relapse too. Pre-pandemic I was fortunate enough to already be able to work from home - sometimes just cutting the commute out of the day and being in your home environment was enough to help you through the day - though again it makes the illness invisible to most.
After work or if I’ve been doing a lot of physical work in the house or garden then afterwards, that’s when I have to recharge, for longer than if I didn’t have ME/CFS and if home life permits (it doesn’t always).
What impact does it have on your lifestyle?
So why don’t I blog as much as I’d like, or spend as much time outside work learning (as a geek like me would like to)?
Quite simply there are insufficient energy funds in the bank so I need to save up by resting, mentally, physically and emotionally.
How can you adjust to the illness?
“self care is not a luxury!”
I have developed coping strategies and techniques over the years but it’s a constant battle and just because you know that doing thing X, or not doing thing Y, sometimes helps - doesn’t mean it always does/will.
It’s not always clear what will trigger/what has triggered a flareup.
Nor do I always heed the signals if they are present - I’m only human after all!
The general advice is listen to your body and give yourself the rest and space you need. Never apologise for looking after yourself - self care is not a luxury!
Also, don’t rush into doing too much to soon as you start to feel better - there is very much a boom and bust (or crash and burn) cycle with ME as it’s very tempting to want to be active when you get some energy back and some relief from symptoms.
Hopefully that gives some insight, and perhaps will help you if you have ME or another invisible illness. And if you don’t have, perhaps it helps you understand and empathise with those who do.
It also goes some way to explaining why I haven’t blogged for so long - with the pandemic we’ve all been living through plus other personal and professional events/challenges (including career/tech discipline change), a relapse is currently in full swing.