Chronically Fucked Off

Chronic fatigue syndrome and living in a body that betrays you 

"Hey, listen, your chronic fatigue is literally exhausting. I don’t think this will work out.” 

And just like that, I got dumped because needing a nap is a red flag.

Chronic fatigue syndrome (CFS) is a chronic illness which affects the body’s nervous systems, causing debilitating fatigue that doesn’t improve with rest. Other symptoms include brain fog, joint and muscle pain, dizziness, and headaches. It’s often triggered by viral infections, like glandular fever, or can be a result of prolonged emotional or physical stress. 

It took 18 months, 25 appointments, and spending over $4000 for someone to finally tell me: “You have chronic fatigue syndrome.”  

Massey alumni Thea Patterson, who also has CFS, laughs when I tell her I was broken up with over my illness.

For Thea, being diagnosed didn’t provide the reassurance she was after. “I should have felt relieved, y’know? But instead of chronically fatigued, I felt chronically fucked off.” 

For many with the syndrome, this is a shared sentiment. By the time I was diagnosed, the relief I had longed for was replaced by something else — grief, frustration, and an aching exhaustion.  

In Year 13, I was constantly on the go — playing sports, taking on leadership roles, and functioning on five hours of sleep a night. I was an absolute academic weapon and prided myself on pushing through exhaustion. 

But soon enough, my body gave out.  

My mum watched as I studied through tears, the brain fog becoming unbearable. I’d faint if I stood up too fast, and was unable to sleep because of joint pain. My doctor skimmed my medical history, noted my anxiety diagnosis, and dismissed it as panic attacks.  

At university, the exhaustion became unbearable. I needed daily naps just to function. Some days, I skipped class, afraid I would fall asleep mid-lecture. No amount of sleep could recharge me.  

I went back to the doctor. She said my depression had worsened and increased my medication.  

Two months later, she blamed my birth control.

After switching birth controls, she called me to ask, “are you still a little sleepy?” She should have signed me up to be Sleepy in the new Snow White right then and there.  

At the next appointment, she told me I needed psychological help.  

Over 18 months, I cycled through different doctors, medical tests, and psychologist appointments. Some blamed anxiety or depression. Others said I slept too much or too little. Another told me to lose weight. One suggested a new hobby – as if taking a pottery class would rejuvenate my nervous system.  

This isn’t unusual for CFS sufferers. Thea tells me, “My doctor told me I just needed to relax and take more bubble baths.”  

Thea was 18 when she got glandular fever. Three months after recovering, she still wasn’t feeling 100%. Normally an A+ student, Thea was falling behind on school, too exhausted to study. Her GP sent her for blood tests, but when they came back normal, he dismissed her fatigue as stress.   

Thea spent her first year of university in bed, watching lectures in between naps, struggling through assignments, and making no friends.

“I felt crazy,” she says, “I kept going back to the doctor saying something wasn’t right. Instead, they sent me to a psychologist.” 

Her psychologist actually listened, “I bawled my eyes out for the first hour probably. After telling her everything, she suspected I had chronic fatigue.”  

Thea and I had similar experiences with being diagnosed – sitting in silence as doctors handed us pamphlets on CFS listing support groups, foods to cut, supplements to take, exercises to avoid, and even rules for sleeping and breathing.  

“All I wanted was to feel normal,” Thea says.

When Thea started applying for jobs, many workplaces asked her to disclose any condition that could affect her work. After multiple rejections, she stopped disclosing her CFS.  

“People judge you for it,” she says, “They think it’s laziness. Like I’m just making excuses not to work.”  

“It made me feel worthless.”  

Having a condition people don’t understand is bad enough. Having one they doubt exists is worse. CFS has only been recognised as an illness in recent decades and isn’t well understood by many medical professionals.  

A third to a half of all GPs do not accept CFS as a genuine clinical entity, and even when they do, they lacked confidence in diagnosing or managing it, according to A Literature Review of GP Knowledge and Understanding of ME/CFS.

Like all chronic illnesses, CFS has no cure. It’s something you manage, and this looks different for everyone. 

For me, I overhauled my life. I gave up sports and running in favour of Yoga and Pilates. I cut back work shifts and took Summer papers to lighten my university load. I drink electrolytes every morning, get monthly B12 shots, and attend a CFS support group. I sold my ticket to Laneway (devastating). And I attempted to give up coffee - that one lasted about as long as my Monday lecture attendance.  

Thea found relief in cutting gluten. Many with CFS experience non-celiac wheat sensitivity, which worsens fatigue, brain fog, and joint pain. 

“I miss proper bread every day,” she laughs, “But you have to find the good in a shitty situation. Without this diagnosis, I wouldn’t have discovered my flat-famous gluten-free brownie recipe.”  

There’s no shame in doing whatever it takes to get by, but it can feel like losing the person you used to be. However, it forced me to redefine health, productivity, and success. I stopped tying my worth to how much I could push through, and started valuing what my body needed. 

I still miss my old self. I miss 6am runs, partying until the early hours, doing a million things a day, and dreaming without being weighed down by my illness.   

But like Thea says, you have to find the good in a shitty situation. My Dad and I now have an extensive knowledge of the Kardashians from spending Saturday nights lying on the couch. I’ve discovered a talent for jigsaw puzzles, because nothing says thrillseeker like completing a 1000-piece puzzle of a cottage. I also have an impressive collection of herbal teas.  

I’m still a little chronically fucked off, but that’s okay.