What is ME/CFS? An Interview – Part Two
Before you read on…
This interview has been split into two parts, and this is the second. To read the first half, go to the Derby Union website, or click the link at the bottom of this article.
There, you’ll find a more extensive description of chronic fatigue syndrome (CFS), as well as its possible symptoms and effects, methods of management, information on CFS/ME Awareness Day and advice for students.
Artie Herbert has been answering questions about their experience as someone with chronic fatigue syndrome. CFS is a disorder characterised by extreme fatigue that is not improved by rest. It is also known as myalgic encephalomyelitis (ME) or systematic exertion intolerance disease (SEID). There is no cure and no known cause.
Could you describe how you first found out you had CFS and outline the process of diagnosis?
I developed CFS during the last year of GCSEs (Year 11) and was diagnosed during Year 12. The walk home from the bus stop was five minutes, but I had to take several breaks to get through it. Once I got home, I’d get onto my bed, uniform still on and all, and fall asleep right away. My mum would wake me up later to eat dinner, then I’d go back to sleep.
At some point, this pattern (and my homework never being turned in) caused my mum some concern and she took me to the GP. The GP ruled out other possible causes with a blood test, then referred me on to a paediatrician. The paediatrician took a very thorough history from me and arranged for me to have an MRI scan of my brain to make sure that the headaches and dizziness didn’t have a more malicious cause. After that, I got my diagnosis – and luckily for me, the area where I lived had a CFS/ME clinic where I was referred for treatment.
In addition to being a largely unknown condition, CFS is also an ‘invisible disability’. Could you explain this term? Has this caused any problems for you?
Invisible disabilities or invisible illnesses are those which don’t have any outwards markers – this umbrella term covers a lot of conditions, like dyslexia, mental health, chronic illness, auditory or visual impairments.
We live with an outdated notion of disability. Mobility issues are still what many people think of when they hear “disability” – it can be hard to readjust to the idea that some physical disabilities aren’t obvious, but still have a huge impact on a person’s life. If they can’t see it, is it really there? I’ve had to fight a lot of doubt and disbelief about my illness from all quarters, including teachers, employers and medical professionals.
Luckily, it’s mostly just a matter of awareness, which is something we all have the power to change (huge thanks to Phantom magazine for doing their part!). It was with extreme irony that I noticed at my local ASDA that their disabled toilet had a handy “not all disabilities are visible!” sign on the door, yet still needed a radar key to open. A for effort, guys, but E for execution.
In a university environment, what can the staff do to improve the accessibility of the facilities?
The most important change, if possible, is to make sure that all classes are recorded and uploaded online, so that students who are having a flare-up don’t miss any content. A lot of students who have CFS use mobility aids, so make sure that all rooms and, for the love of God, bathrooms are accessible via lift.
Campuses can be very stimulating places, and many people with CFS suffer from sensory overload – setting aside as many silent study spaces as possible would really help.
Friends with CFS
How might a university student be there for a friend who has CFS?
I have three pieces of advice regarding this that come from my own experience:
Trust them to know their limits. It will be surprising just how much your friend’s energy levels vary from day to day – it still surprises me from time to time. Your friend will still want to carry on with as much of their normal life as they can – if you want to organise something or ask them for help, don’t worry about putting too much on them. They’ll tell you if they can’t!
Also, let them know you’re there for them. Living with CFS and dealing with other people’s attitudes to disability is very frustrating. Listening to your friend when they need it is probably the most important, most supportive thing you can offer them. If you’re able to lend a hand (like grocery shopping or giving copies of your lecture notes) when your friend is having a crash, that can be unbelievably valuable. I have a friend who once bought & carried a 30-pack box of sesame ramen all the way from the bulk food store in Croydon so I’d have something to eat during my crashes and that was a lifesaver – not all heroes wear floral bomber jackets, but this one does.
Lastly, be patient. Hanging out with your friend is going to involve taking a lot of breaks, sit downs, and if you’re amenable, platonic naps. Enjoy taking the time to stop and breathe some fresh air.
Lastly, can you explain what Spoon Theory is?
Spoon Theory is a disability metaphor that people who have energy limits use to try and explain how they must ration their energy. It can be hard for someone who doesn’t have an energy limiting condition to conceptualise how a person’s body will cease to function when all their energy stores have been used up. Most people don’t have to plan for the energy expenditure of taking a shower or brushing their teeth – so Spoon Theory tries to demonstrate what living like this is like.
The term was coined by Christine Miserandino, who posed the following scenario to her friend: you are holding 12 spoons in your hand. You go through the activities of a normal day – but you have to put down one or more spoons for every activity. Getting dressed for work costs one spoon, travelling to and from work costs three spoons, going to the supermarket costs four spoons. Eventually, you have run out of spoons, and you can’t perform any more activities until you’ve rested for your eight hours.
You wake up the next day. You are holding twelve spoons. You weigh out everything you have to do that day, shrewdly trying to balance the energetic books – knowing that once you have run out of spoons, you will barely be able to move.
You wake up the next day. You are holding twelve spoons. And so it goes.
CFS is not a well-known condition, and it is important to raise awareness for it. ME/CFS and Fibromyalgia International Awareness Day is May 12th. For more information on the condition and how to manage it, please check out the links below.
You’ll also find a link to the first part of this interview in Phantom’s Wellbeing issue of March 2020. Part one is located on page 15, but do have a look through the whole edition! There are also articles on sleeping tips, grounding techniques and breathing exercises – as well as a recipe for a warming stew!
For Phantom’s Wellbeing issue:
For more information on ME/CFS and how to manage the condition: