How do you even begin to explain to someone who isn’t going through the illness directly what is going on? How do you prove to them that they don’t need to help you? That simply being there and trying to understand is enough. How do you show someone that there really is nothing they can do to make this go away?
How do you tell them that it’s okay?
It’s easy to assume that the most difficult part about being chronically ill would be the illness itself and the symptoms that come along with it. For me at least, this is far from the truth. One of the hardest things that I have found is trying to help those around me to understand what is going on. It’s painful to watch those you love try to help you, constantly wishing that they could make it better but also struggling to understand what it really is, and what it really means. And it’s difficult to help them come to terms with it. For me, it’s easy to understand what’s going on – I have to deal with it every second of every day. For them, they only see it occasionally and they see it as random and unpredictable – one day I am out laughing and running and the next I am bed bound and can barely lift my hand to my face.
So this post is written for two groups of people; to those of you who spend your lives trying to understand the pain and who wish that you could do more, and to those of you who feel this pain every single day and wish you knew how to explain it.
When I’m lost for words (pretty frequently with this brain fog) I tend to turn to two places. Google, or a dictionary. Or a dictionary via google. So what does that tell us about ME/CFS?
My – Muscle
Algic – Pain
Encephalo – Brain
Myel – Spinal Cord
Itis – Inflammation
Inflammation of the brain and spinal cord. Which sounds pretty serious… but I’m not sure it really helps those of us without any medical knowledge to actually understand what it going on. In fact, I’d go as far as to say it terrifies the crap out of me and when faced with the prospect of understanding it I actually just want to bury my head in the sand and hope it will go away.
Okay, so the scientific definition is a little too scientific to help us. Good thing there is a dumbed down, plain language version… right?
Chronic – Persisting for a long time or constantly recurring
Fatigue – Extreme tiredness resulting from mental or physical exertion or illness
Syndrome – A group of symptoms which consistently occur together, or a condition characterised by a set of associated symptoms.
A condition characterised by a set of associated symptoms caused by extreme long term or recurring tiredness resulting from mental or physical exertion.
To be honest… I’m not sure this is any better. My little brain sees TIRED! They’re TIRED! And then jumps to I KNOW WHAT TIRED FEELS LIKE! Trust me, to those of you trying to understand this condition. PLEASE, please do NOT tell a sufferer that you too feel tired. This is sooooo much more than just being tired. Let’s break it down –
- It is LONG TERM and/or RECURRING. There is no cure, it will be around forever. It will fluctuate in intensity but it will always be there.
- There are MANY SYMPTOMS. Hundreds. It’s different for absolutely everyone who has it. I have recently started to jot down the three top symptoms of every day in my diary. If I look back over the last few weeks I see, blurred vision, double vision, headaches, skin painful to touch, aching joints, intention tremor, heaviness of muscles, racing heart, unable to lie on my left due to stomach pain, difficulty remaining standing, brain fog, concentration issues, struggling to understand speech… the list goes on.
- Symptoms are brought on by MENTAL and/or PHYSICAL EXERTION. There are different stages of this and again, it differs from person to person. For me exertion is often stress related, so I’ve put a lot of time into learning to manage stress. Tolerance levels can change drastically from one day to another, today I showered and was able to immediately head downstairs to make my breakfast, a couple of days ago, showering left me curled up in a ball on my bed, not even able to make it underneath the blankets.
There is no simple way to describe this illness, the scientific name is scary and intimidating, the plain English name too simple and misinterpreted. Luckily we don’t need people to understand, we simply need people to try, and to accept that not understanding is okay.
Do any of you have some methods you use for explaining it to people? Or any examples of when someone just really did not get it? Let me know in the comments!