FAQs about CFS

We always get asked what is CFS? Not only can it be mystifying for the sufferer but also for those that come into contact with the sufferer.

This section aims to help people understand what CFS is and enable them to help explain to others what their condition may entail. These explanations stem from our understanding as well as discussions from our support page. There is no right way to describe CFS as there is no perfect way to describe the color blue and everybody’s experience is different so if you have any other ways that you describe CFS please send us an email or leave a comment on the Facebook support page.

Ways of describing CFS to those around you:

Firstly it is important to emphasise that tired does not equal fatigue. We all become tired and it is a normal part of our day to day routine, fatigue is pathological and can severely affect your ability to perform activities of daily living and often people feel the need to rest immediately. It is not the same but often a way of describing it to people is the difference between being tired and fatigued is having a busy day versus jetlag after a long haul flight.

The following are suggestions from our Facebook page:
•“I feel sleepy when I’m battling an infection usually. Fatigue feels like I’m empty inside and my rechargeable battery never fills up more than a third of what it should. Always running on empty”
•“Mental fatigue is like the morning after flying the red eye and the physical fatigue like having heavy weights tied to my legs, arms and shoulders”
•“Trying to get through the day with a bad flu, as opposed to a general cold. Most people can relate to that or trying to get through the day not having slept at all the night before. You can get by and do things, but it’s a lot tougher!”
•“I have found it really useful to share this YouTube clip with close friends to assist in their understanding of the illness. It is a tough video to watch the first time (just wanted to prepare you) but I found it gives them really good insight into what has been going on for me”

Spoon theory is a useful way of explaining the impact that chronic disease can have on a persons life, click here to read more

Ways of dealing with people asking how you are

People have the best intentions but being reminded how you feel is not always helpful or being known as the person with CFS rather than just ‘Peter’. It can be hard when people ask ‘how are you going’ because most people don’t understand that the fatigue never stops but just fluctuates and progress is not quick but gradual. How do you deal with this question?

We usually suggest a few options for people. It is often best to sit down with the person if they are close to you and have interest in CFS and try and explain how you feel and what makes you feel worse, this can help them understand a little and even ‘get off your back’ about doing more with them. If you see someone regularly and they are always asking how you are you may find it helpful (but also a maybe a bit confronting) to say that if I had lost my leg in a motor accident would you keep asking me about if I missed it? This can help people understand that you don’t want to focus on what you don’t have but what you can do. Alternatively you may try and deflect the question with answers that are non commitive like ‘getting there’ and ‘one step at a time’ and then ask the person something about themselves to move the conversation on.