Invisible illness: Chronic fatigue syndrome

Tiredness may be familiar to you as a symptom of being a mum. So you can imagine being a mum with chronic fatigue syndrome isn't easy.

Katie Foden (45) is married with two children and is studying psychology part-time. She has chronic fatigue syndrome, an illness which leaves sufferers exhausted after minimal activity and is characterised by a wide range of flu-like symptoms, such as swollen glands, muscle and joint pain, mental sluggishness, sleep disturbance and extreme tiredness.
Chronic fatigue syndrome is a really odd condition to have, mainly because not many people truly understand it and therefore often doubt its validity. Many sufferers, like myself, feel judged so do our best to try to cover it up and smile a lot.
This makes it even worse as people think we’re okay and are then surprised when we have to cancel a social engagement because we’re feeling awful just a day later. My symptoms vary from day to day.
Most days, no matter how much I’ve slept, I wake up feeling totally unrefreshed; my digestion is poor and I often have brain fog, like when you have a newborn baby. My short-term memory is pretty bad and I tire easily. It’s like being old before my time.
It all started about 20 years ago when I got glandular fever. I was working in customer service at BellSouth (now Vodafone) and collapsed at my desk.
I became really unwell and had to leave my flat and my job and go back to live with my parents at the age of 26. I had just met the man who would end up being my husband and I’m sure he wondered what he’d signed up for.
I guess that’s where the chronic fatigue stemmed from and it has never really abated, although I have had periods which have been worse than others. In the early years this was largely my fault. I was so embarrassed of being so tired and sick that I just tried to push through it.
When my husband, Jason, and I were living in London I was working as a teacher and refused to tell anyone about my condition. I used to sleep in my car during the lunch break just to get through the day. I guess I saw being ill as a weakness, so I tried to pretend it wasn’t happening. Turns out you can’t just positive think your way out of everything.
Chronic fatigue is complicated for others to understand as there aren’t a lot of obvious outward symptoms. No one wants to be a whinger, so I always put my best face forward and am outgoing and friendly around people, no matter how I feel.
It’s so hard to explain to someone who has just seen me looking fine that I’m in bed with the kind of exhaustion you’d feel after doing a couple of marathons back to back. The other day I slept for five hours straight during the day. I woke feeling not only guilty but also no better physically. It’s incredibly frustrating.
Now I’m older I’m getting better at managing it. I used to worry about people not wanting to be my friend if they found out – it has happened – but now I don’t care. I am who I am and this is part of me; people just have to deal with it.
I used to try to keep up with all the supermums at school who ferry their kids to a million after-school activities and still manage to look amazing. That’s not my life and I need to manage things in the way that’s best for my health.
My family is amazing. Jason has never once complained in the 18 years we’ve been together. I have a seven-year-old and an 11-year-old, and while I feel guilty not being able to do as much as I’d like to with them, they are both very understanding.
I’m studying part-time towards a graduate diploma in psychology at university and it is helping me understand a lot about human behaviour. Women are often people-pleasers and letting people down, as I often have to, is really hard – as I’m sure it is for all women with these invisible diseases. I’m exhausted from trying to pretend that everything is okay and that this isn’t a huge and all-consuming part of my life.
I find some solace in restorative or yin yoga. I used to love running but realise that heavy cardio or even regular yoga wipes me out and makes my muscles feel ridiculously weak. I’m seeing an integrative doctor to look at supplements that might help, because I’ve found the mainstream medical profession to be largely stumped by chronic fatigue.
I’m always looking for treatments that might help and I just try to manage things day to day. It’s hard not to get frustrated when I have so much I want to do with my life but I’ve learned that just pressing on and ignoring it doesn’t really help. I hope one day to be able to set up my own counselling service for other chronic fatigue sufferers, so they know they’re not alone.

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