“It’s like an empty battery trying to work” – living with Chronic Fatigue Syndrome

Friday, 12 May is Chronic Fatigue Syndrome Awareness Day. Chronic Fatigue Syndrome (CFS) has been dismissed as “yuppie flu” or “shirker syndrome” in the past. It has been misconstrued as tiredness and depression. Recently, however, there has been a surge in research to dispel the misconceptions surrounding CFS and define it as a real illness. This month, patients suffering from the illness and researchers at the National Institute of Health in the US are participating in an in-house study with the hope of explaining the mysterious illness. The Daily Vox spoke to Nomsa Gamedze, a student who suffers with the illness to learn more about what it’s like to live with the illness.

Up until now, CFS has only been defined by symptoms as a syndrome because they haven’t found anything that links the patients other than symptoms. Researchers are still trying to find a biomarker that will help with diagnosis and treatment so essentially it’s just a constellation of symptoms. CFS is marked by fatigue at different levels, joint and muscle pains, post-exertional malaise is an important one. We get flare-ups of symptoms after over-exerting ourselves. It’s periodic, it increases and decreases in severity based on a lot of things: we can be very sensitive to temperature, changes in weather, and changing cities.

I’ve been sick since 2011 but I only got diagnosed in 2015. Before I was diagnosed, I just thought what I was feeling was normal and not significant so I just carried on doing everything that I was doing even though it was getting harder and harder. I was in grade 10 when I first got sick. I was very sporty and involved in school life. There were times in high school when I was sleeping 18 hours a day. I would come home from school, sleep, then wake up to eat supper, and do my homework and then go back to bed.

My diagnosis came in second year of university. I was doing very badly, I was catching a whole lot of acute infections which pretty much always would cause a flare-up afterwards. That was the first time it really started to affect my grades and I failed my first course that semester which meant I got kicked out of my degree programme. It felt like I was running on empty and eventually I was going to have to stop and recuperate. By the end of the second semester, I was running completely on energy drinks. I tried to go back the next semester but I had to pull out in a couple of weeks because I just didn’t have it in me.

The treatments for CFS are symptomatic. The things that have been recognised as helpful by some studies in the past have been Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). The studies have since been disproved. For most people, GET is dangerous. CBT is great for people to see a therapist because CFS is a huge life change and a very long and lonely transition into a new kind of life. I think therapy is great but CBT – the kind they recommend – is basically telling people it’s psychosomatic, which is not helpful because it’s not true. The treatment is very individual. Most people treat it with antidepressants.

I have fibromyalgia as well. Chronic fatigue and fibromyalgia exist on a spectrum where the severity of your fatigue and pain – which is the bigger symptom for you – will decide whether you have CFS or fibromyalgia. I fit the criteria for both. There are certain drugs approved for treating fibromyalgia which are mainly antidepressants. Our thresholds for exhaustion and feeling pain are very low which is why we overexert ourselves very easily. The antidepressants are to help push up your thresholds. I don’t know of anyone who has cured CFS with antidepressants but it definitely does make a difference. The thing is that it is quite expensive. I am on six different meds every day.

When I tell people I have CFS, most say something ridiculous like, “Yeah I’m tired too.” Some ask what it is. I am more likely to say I have fibromyalgia to someone because people have vaguely heard of CFS and think they know what it is – and don’t – and end up saying something ignorant and offensive. People have said, “Push through,” before I really knew that I was sick. That was also advice that I was giving myself because I definitely had trouble believing myself when no one else would believe me.

The concept of fatigue is very poorly understood. Tiredness and fatigue are not the same thing. It’s very difficult to describe. I saw an explanation recently that someone wrote that it’s like when you get a really bad flu – that feeling, like you’re just sick and you’re weak – it feels like a lot of work to get up or to pick something up. It feels like you don’t have any energy resources and your muscles are weak. It’s like an empty battery trying to work.

CFS exists and that it’s very fluid and variable. Researchers are still trying to find a medical marker for it, so people – including doctors – don’t really believe in it. I don’t know anyone who has CFS who hasn’t had a doctor try to tell them that it’s just depression. Depression is not a “just” but that constant gaslighting is harmful especially because of our tendency to not believe ourselves already and to do more than we can. When that happens, flare-ups can last for months. When I’m flaring I spend 90% of my time in bed and this just lasts as long as it lasts. I can feel fine now and then in a couple of hours feel awful and have to sleep. I can’t predict my body better than anyone else can.

Featured image via Wikimedia Commons