The Invisible Illness…
Chronic Fatigue Syndrome (CFS)
Understood through a sufferer and her mother.
For the purpose of privacy, the interviewees wish to keep anonymous and therefore their names have been changed.
Being an active hockey player, book lover and a dedicated student, Freya’s life completely changed when she became bed-ridden. She knew something was not quite right when the headache intensified and the tiredness took over her every day life.
Freya is now 22 years old, committed to studying at university and back on track to a ‘normal life’ despite the struggles experienced for numerous years. Her experiences with Chronic Fatigue Syndrome still continue to this day, yet the symptoms have subdued and she’s no longer bed-ridden. Some of the most prominent symptoms she continues to face are extreme tiredness, vulnerability to viruses, dizziness and migraines. Every day is different, some days she can’t get out of bed, other days she can. Due to this, she also has a reduced course load at university.
Freya was diagnosed with Chronic Fatigue Syndrome in 2009. Chronic Fatigue Syndrome (also referred to as Myalgic Encephalomyelitis) is an illness characterized by a wide range of symptoms. These can include muscle and joint pain, sleep abnormalities, increased vulnerability to the flu and viruses, severe headaches, cognitive dysfunction through brain fogs and impact on short-term memory. The most commonly felt symptom is the extreme fatigue; experienced not only post-exercise, but on a daily basis. The symptoms can range from mild to an extreme-bed-ridden state or worst case scenario, death.
The severity of the illness varies per person and has the ability to change over time. Some may have the illness for less than a year, whereas others for a lifetime. There is no cure, the cause of the illness remains unknown and limited research is being conducted due to a lack of awareness and funding.
According to Fred Friedberg the president of the Chronic Fatigue Syndrome / Myalgic Encephalomyelitis International Association, Chronic Fatigue impacts millions of people around the world.
Yet, often people have never heard of Chronic Fatigue Syndrome before. This means that sufferers often feel like their illness is invisible to outsiders.
What does the daily life of a sufferer look like?
Line of pills
To combat a range of symptoms, different supplements including vitamins and/or medicine become normal to take on a daily basis.
Light sensitivity.
Exposure to light, which could be as simple as opening the curtain to sunlight, can create or intensify headaches. This means that often rooms need to be kept dark.
Breakfast and supplements served in bed on a tray.
A Chronic Fatigue sufferer may be incapable of participating in daily activities such as sitting at the table to have meals.
Brain Fog.
Cognitive dysfunction can play itself out in the form of a ‘brain fog’. This is a period of time where thoughts go cloudy or memory is altered altogether. This can be especially difficult for students.
Sitting in a shower to avoid fainting.
Standing for prolonged periods of time can cause for light headedness and cause the sufferer to faint. Excessive periods of time spent in bed also causes for muscle weakness, making standing difficult at times.
Freya explains:
How does it impact Freya?
Social:
Freya was lucky enough to have a group of friends who supported her, but it came with difficulties.
Friends can think, you don’t want to hang out with me? No, its just that my body can’t handle this
Family dynamics:
Freya’s parents were enormously supportive and made compromises to ensure the best circumstances for their daughter. Her father kept working whilst her mother became a full time carer.
My mum couldn’t work and had the pressure to find out what was really going on.
“My dad, he’s a real ‘take care of my family kind of guy’, so it was hard on him not to be able to do anything”
A Mother’s Perspective
Nicole explains how the impact of Chronic Fatigue Syndrome spills over to the rest of the family in a variety of ways. Nicole was unable to pursue work as she became a full-time carer for Freya, meanwhile her husband had to keep working.
When Freya was bedridden, unable to eat or drink and could barely talk, they had a period of around ten months where they barely saw anybody. Nicole explained that “people around you don’t understand what’s going on… they just stay away.” This took a toll on Nicole’s social life and ability to do simple things with friends, such as grab a coffee. Nicole explained that “trying to organise a babysitter for a seventeen-year-old [wasn’t] exactly the easiest thing to do.”
If she were to be with friends, she would often place her phone on the table to be on call 24/7, just in case something were to spontaneously happen. Nicole mentioned that one friend would sometimes just come by with a home cooked meal and would just sit and listen, she said this helped a lot.
“People around you don’t understand what’s going on …
…they tend to just stay away”
At first, doctors told her that she may have post-viral fatigue, explaining “it’s like a cold, it will go away again”. Freya’s diagnosis came after six months of constant tiredness including a range of other things too, such as headache, a cold, flu-like symptoms and muscle and joint pain all over. However, symptoms continued to escalate, the headache never left and the fatigue became more extreme. Nicole began to realize the enormity of the problem once the doctor officially diagnosed Freya with Chronic Fatigue Syndrome.
Her family doctor didn’t know how to treat her, so he sent her to a family paediatrician. The paediatrician looked at her lymph nodes, her thyroids and her blood levels, but didn’t know where to go further from there. Nicole explains that it was like witnessing someone end up in a “waste basket of cases, where you only end up in if the doctors don’t know what to do with you anymore.”
“[CFS is like a] waste basket of cases,
… where you only end up in if the doctors don’t know what to do with you anymore.”
The second paediatrician was specialized in Chronic Fatigue Syndrome, well known and located in one of the biggest hospitals of the state. Whilst he was specialized in Chronic Fatigue, he took a simple approach to treating it through medication. A new type of medication was prescribed for every new symptom that would arise . This led to multiple different types of medications, leading to new side effects and little results. He concluded that it must’ve just been in her head as there was no other answer.
Is it psychological?
Nicole explains that a lot of the doctors simply told Freya it was depression, but seeing all the other symptoms, she just knew it went further than a mental illness. She explained that Freya was always willing to get out of her situation and whilst she did experience mental difficulties, it was simply unjust to label her situation as one it was not.
Nicole explains that one of the biggest misconceptions is that Chronic Fatigue sufferers are claimed to “put themselves in that position”. In a process of searching for answers, this was both dismissive and extremely damaging to not only the sufferer but the family as well.
Nicole was told by the paediatrician at some point that it was her own fault as a mother. With tears in her eyes, Nicole explained how painful it is to feel like you’re the culprit of your daughters illness. Not being able to give your daughter the answers she was after, was immensely difficult on the both of them.
This required Nicole to begin her own research, to look into alternative treatment and to dig deeper into the cause of the illness. Freya’s symptoms came directly after a HPV immunisation. However, considering the controversy surrounding vaccine side effects, doctors were hesitant to look into that as a reason.
Freya is not alone in her experiences of not being taken seriously. Chronic Fatigue patients often report not receiving the adequate treatment once they are diagnosed. A recentstudy conducted in the Georgetown University Medical Center, looked into the perceptions of Chronic Fatigue Syndrome in the Emergency Department, finding that two thirds of respondents reported that they wouldn’t go to an Emergency Department due to previous bad experiences or believing they wouldn’t be taken seriously. A high proportion of the 282 participants who took part in research conducted on Chronic Fatigue reported that they would often be told “its all in your head.”
They would often be told…
it’s all in your head“
– GEORGETOWN UNIVERSITY STUDY
Confirmed by Scientists and Medical Professionals
Whilst still limited, there has been more research conducted on the physical symptoms of the illness since Freya’s diagnosis. To name a few, according to the ME/CFS Research Summary by Jamie Seltzer, errors in cellular production, slowed metabolism, gut bacteria, changes in brain matter and a different gene function post-exercise have all been scientifically proven to be a result of Chronic Fatigue Syndrome. The search for a bacteria or virus that cause the illness has been unsuccessful. There are many theories, yet the direct causal link remains unknown.
How can you help?
Nicole particularly emphasizes the importance of bystanders in helping someone deal with Chronic Fatigue Syndrome. Spending all day in bed often gets lonely, therefore a sufferer often feels socially isolated. She stresses that it’s important for people to avoid judging and to “read about it and ask questions, just ask the person”.
When Freya was at school, kids would often tell her that they would be tired as well when they woke up in the morning, or they would question why she could sometimes show up at a party for less than an hour and not at school that day. The most important part of is to keep inviting someone to parties or social gatherings, this helps them feel less alone.
It’s extremely helpful to be open minded when they can’t make it or when they tell you today’s a bad day. The thought that they are not alone already closes a large gap between non-sufferers and sufferers.
“It’s extremely helpful to be open minded when they can’t make it or when they tell you today’s a bad day.”
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