"I felt trapped in my mind and and body." The silent illness that took over Kate's life.

The year I started my new brand new law degree, and things looked promising. I had worked hard to transfer to this much more challenging chapter of my life, so that I could be a human rights lawyer, and I was so ready. I’d downed a jumbo sized soy latte. I’d spent a small fortune on my text books. I’d watched Legally Blonde at least a dozen times.

I was going to be the best damned law student ever.

Life had something else in store for me though. Just as I was settling into my studies, I was diagnosed with Chronic Fatigue Syndrome.

My psychologist had referred me to a sleep clinic, initially concerned I had narcolepsy – you know, that thing where you literally fall asleep at random, because all I seemed to do was sleep. As it turned out, there’s a difference between being sleepy, and being tired, and I was the latter.

Between the sleeping in until midday, then needing to take a three hour nap every afternoon, the intense pain all over, the massive spike in anxiety, the utter exhaustion felt after just walking around, the feeling of being trapped inside my own body, the sudden intolerance to dairy, the vomiting up of vitamins, and often even the inability to find the strength to physically get out of bed, I didn’t have a great deal of time for study. I failed miserably at university for two years, and life became one huge challenge.

I couldn’t even watch TV. Being awake was exhausting. Being alive soon became unbearable. I felt trapped, in my body and my mind. There were nights were all I could do was lie in bed and cry, and even then that became too much effort.

Not a lot is known about CFS, what causes it, or how to fix it. Which, for those it affects, can be infuriating. It’s a complex disorder, and according to Better Health, CFS is “a neurological condition that can affect children and adults of any age. Other symptoms include pain, disrupted sleep, difficulty thinking, and changes in blood pressure, hormones and body temperature.” The main feature of CFS though is “exhaustion after any form of exertion” otherwise known as a “crash”. Exercise triggers these crashes, although in my case, stress is a main trigger as well.

MECFS suggest as many as 180,000 Australians are affected by CFS. It's often preceded by glandular fever, which I was hospitalised with when I was 19. They wanted to remove my gallbladder, and the fever had infected my liver and spleen. All I really remember was that I was a hot, gross, sick, sweaty mess, and my doctor was unfairly good-looking.

Lack of information doesn’t just affect those suffering CFS, but also the attitude of those around them as it's not a visible illness. Better Health advise on their website that: "Some people in the community think wrongly that a person with CFS is ‘just being tired’, that the illness is ‘in their head’ or that they should ‘just push through’. This misunderstanding is not helpful and can often cause a person to keep pushing beyond their limits, which will cause relapses and make their condition worse."  I couldn’t have written it better myself.

Being told that I should just do exercise even if I was chronically exhausted, or that ‘oh what, so you’re just tired all the time right?’ was trivialising a very debilitating disorder. People seem to think you're just lazy, and that you're choosing not to get better, as though a walk in the park and a green smoothie would fix everything. My favourite were the armchair experts who told me I was simply sleeping too much, and if I got up earlier I'd feel better. Well gee, thanks! I wish I'd thought of that incredibly useful, non-condescending piece of advice myself!

Everyone who suffers from CFS will have a different experience, but for me, there were a few things that helped me through. Seeing a psychologist was fantastic as I could manage my stress and help keep the condition under check a little better. I was lucky to have a GP who was supportive and who explained the condition to me. I also found yoga to be a great low-intensive exercise while clearing out my head at the same time. Essentially though, I had to learn to take it slow, and ride the wave. I learnt to listen to my body and respect it. If I was tired, I had to accept that. I eliminated the stressful elements of my life and started to enjoy the slow pace.

Listen: Endometriosis is another silent illness. Hear Syl Freedman chat to Mia Freedman about her experiences.

There were times when it was really, really hard. Where I would simply break down in tears in the middle of whatever I was doing and sob uncontrollably, terrified that this unbearable, total exhaustion would keep me company for the rest of my life. I didn't think I could handle it, and there were plenty of times where it all felt too much.

That was five years ago, and while my condition is far more manageable now, I still get relapses, and probably will for a few more years to come. I still get frustrated from time to time, but I’ve learnt to take the fast with the slow, and to also prioritise where my energy is going. In a lot of ways CFS has helped me appreciate the smaller achievements, learn not to take my body and health for granted, and allowed me to better understand my body and mind.

Kate is a writer and broadcaster originally from Melbourne, who swapped soy lattes and dreary weather for the sunshine and chai tea of the North Coast NSW, where she works in commercial radio telling hilarious stories about her dogs/mum/housemates.