Pin It
Aug 202015
5 Things You Might Not Know About Chronic

5 Things You Might Not Know About Chronic

I’ve been there myself and felt that pang of anger in my stomach, that moment when I’m catching up with friends and they complain that they’re having to take on a lot more work because their colleague is suspected of having Chronic Fatigue Syndrome (CFS). I used to react, but I don’t anymore- it’s impossible for others to really understand what it is sufferers go through if they haven’t been there themselves.

Although I was diagnosed with M.E. (Myalgic Encephalomyelitis), this illness seems to have morphed into the more commonly recognised (and slightly easier to pronounce) Chronic Fatigue Syndrome, but this name still really annoys lots of sufferers. Whether you believe that M.E. and CFS are the same illness or slightly different, there are still a few misconceptions about the illness which most people don’t realise.

5 Things You Might Not Know About Chronic Fatigue Syndrome

1) It’s not just about the fatigue

Feeling as though your muscles are going to melt away, not being able to finish a sentence because you’ve forgotten why you started speaking in the first place, living like a nocturnal creature and walking around like a living zombie. Unfortunately, the illness’ name doesn’t really represent the extent of what CFS sufferers have to go through on a daily basis.

‘Systemic Exertion Intolerance Disease’, a new name for the illness created earlier this year by the Institute of Medicine, also has the same complication. I don’t know many people who are tolerant to exertion- we’re only human after all. Muscle pain, brain fog and an intolerance to light and loud noises are only a fraction of the list of symptoms that can be added onto life-altering fatigue.

2) More people have it than you think

According to the Centers for Disease Control and Prevention (source), one million Americans and a quarter of a million people in the U.K. have CFS, M.E. or PVFS (Post-Viral Fatigue Syndrome). However, these figures are from a number of years ago and are increasing worldwide all the time.

The numbers just go to prove that it’s not in our heads- millions of people can’t be wrong.

flower picture unsplash

3) A Weekend in Bed Won’t Cut IT

I was ill with CFS/M.E. for 10 years, one of which was spent sleeping in bed for around 21 hours a day and feeling like I had been hit over the head for the majority of the other nine.

There’s a common misconception that if you’re chronically fatigued, you’re not feeling totally wiped-out. It’s nothing a few lie-ins, a Netflix marathon and a takeaway won’t get rid of.

But the truth is that some people have been ill for years with this illness. An added bonus to this condition is chronic insomnia- ironic, I know- so even if people look ok or seem to be functioning reasonably well, their body clocks and general health might take months to normalise.

4) People with CFS aren’t lazy

I’m sure you remember the time when ‘yuppie flu’ was the topic of much heated debate, but the truth is, I’ve never met or heard from a single person with the illness who isn’t desperately trying to get out of their situation. A lot of people who become sick are your typical type-A personality, always striving, and so suddenly going to zero energy has us totally bewildered.

We are not lazy people. We make ourselves relapse in an effort to recover and ignore what our bodies are telling us. We make ourselves even worse when we push ourselves, and then feel terrible when all of our symptoms flare up. It’s the world’s worst vicious cycle.

5) There is no cure

Even for a diagnosis of the illness, you have to rule out a whole list of other illnesses just to be sure, and even if it is diagnosed, there’s very little that patients can do with this new information. It’s a complete mystery.

So, if you have a friend or family member who is ill with CFS, M.E. or another chronic illness, please send a little love their way. We’re frustrated out of our minds and have no ideas what’s happening to us either.

Love, Katie  xxx

* Main Photo by Anfal Shamsudeen; second photo by Jimmy Chang; both for Unsplash


Family and Friends E-Book CFSClick the image above to download a free CFS e-book for friends and family

  8 Responses to “5 Things You Might Not Know About Chronic Fatigue Syndrome”

  1. I feel like that for 5years now..

    Docter said I’ve got fibromyalaga.

    It is terrible

    • Sending you lots of love, Judy- it must be so difficult for you. Here is a little article I wrote on muscle pain- it might help with your fibromyalgia symptoms.

      Look after yourself- love, Katie xxx

      • Thank u dear Katie it is good to speak to someone who understand us… I had a double mastectomy 4 months ago and yes the painis worse than a normal person. It is hel on earth but now I have someone who understand… Thank u angel woman. Love Judy xxxx

  2. Thank you. It’s unfortunate that people who have never had it don’t understand it. We must learn to trust ourselves, understand and “read” our own bodies in detail, and not waste energy worrying about what others think. I’ve grown as a person through this experience and look forward to being well so hopefully I can be a support to those who have to suffer the physical, mental, and emotional consequences of CFS. Again, really appreciate your article.

    • My pleasure, Brooke- I understand what you mean about learning to focus on yourself rather than others. At the beginning, we want others to make us stronger, but we soon learn that we have to be our own strength.

      Lots of love, Brooke- xxx

  3. My old manager (I had to leave my job due to lack of support and understanding) used to ask me how my CFS was after the weekend and when I replied “still the same” she would be completely baffled that a weekend of rest hadn’t made me feel any better.
    This is a woman I had sent tons of information to in an attempt to get her to understand the condition.
    So frustrating..
    Victoria x

    • I think it’s definitely one of these illnesses that you can never fully understand unless you’ve had it, Victoria- sorry about your experience.

      Katie xx

Leave a Reply