Chronic Fatigue Syndrome (CFS for short) is a
chronic health condition. Its symptoms include extreme tiredness, sleep
problems, headaches, widespread pain, a sore throat or glands, concentration
problems, dizziness, nausea, and palpitations. As an invisible illness which is
not widely understood, those who suffer with it can find it an extremely
Recent university graduate Will McNally has been dealing
with the symptoms of CFS for five years. At a time when he should be feeling
the world is his oyster, I spoke to him to find out how the condition affects
his life and work, and how a platform like Patchwork Hub could help him find
community support as well as opportunities.
How long have you had CFS and how long were
you suffering with symptoms before you were diagnosed?
I have been diagnosed with CFS for just under
one year, but have been suffering from the symptoms for five years. The
condition came about as a result of a major operation in 2015 - my body never
fully recovered from the changes and trauma, resulting in extreme fatigue.
Was the diagnosis process difficult?
The diagnosis was made more difficult by the
symptoms and fatigue at first being pinned on the original operation, and then
the follow-up operation almost three years later. However, the effects never
subsided, and progressively worsened.
What symptoms do you experience, and how does
CFS make you feel?
CFS can have both physical and mental effects
as a result of each other. I average between 8-12 hours of sleep each day, and
no matter how much sleep I get or how good the sleep is, I feel exhausted upon
waking up and therefore struggle to get out of bed.
On particularly bad days, I
have slept for around 16+ hours. The feeling itself is a constant, plaguing
fatigue: at no point within the last five years have I felt anything other than
tired. It’s a constant feeling that if I were to crawl back into bed at any
point during the day, I could, and would, fall back into sleep.
also creates an ongoing mindset of procrastination: I almost always find myself
in the mindset of “I’ll do it tomorrow, I’m too tired now”. This can, in turn,
be detrimental to my mental health as I’ll feel lazy and unaccomplished, yet
still exhausted as if I’d been busy all day.
Do you feel that you and your condition are
taken seriously, not only by medical professionals, but by university staff and
Not at all. I have never found a workplace or
educational institution that has taken this condition seriously, and it is
either perceived as laziness or caused by a lack of: iron, vitamins, exercise,
healthy eating, a good sleep pattern…You’re therefore deemed unenthusiastic and
The fact is there is very little I can do to combat these issues -
at my busiest period in university, I was working 12 hours a day, every day,
and sleeping 12 hours a day (including a nap in the afternoon). I missed out on
lectures I deemed not important enough to have to fight this fatigue and get
out of bed for, and at many I did go to, I would find myself falling asleep.
Having friends, family, tutors, and healthcare professionals telling me for
years that I needed to work harder at getting into a better routine, eating
more healthily, exercising regularly, and taking many multivitamins was always
infuriating when I knew that over these five years I had done all of the above.
I had been the definition of health and peak fitness and yet this condition
never lessened, but no one would see it as more than just an adolescent male
who slept too much.
Did the condition affect your ability to work
and study during your degree?
This condition impacted my education and higher
education immensely. I did not spend £50,000 over three years to willingly
sleep through lectures and avoid classes for a subject I chose and loved. I was
forced to miss out on many workshops and lectures during my course because I
just felt too exhausted to leave the house.
My tutors, and my university as a
whole, understand the condition so little that they never provided me with any
extra support despite my full disclosure of my disability, something that
severely impacted me in my hugely busy final year.
What are your most effective coping mechanisms?
The only mechanism I found that had any impact
was a daily structure when I was in a position where I needed to be productive.
For example, I used to work at a restaurant where I couldn’t be late or this
could reflect badly on me, leading me to ensure I was awake, ready, and at work
on time. However, this was unhealthy in a different way as it never stopped my
fatigue, and instead I felt as if I was suffering through each shift, just
wanting to go home and rest.
Putting yourself in a position where you are so
exhausted and want to get more sleep, but panic because you can’t be late to
work and get fired, is also terrible for your mental health. Other than this, I
have still not found any mechanism that has helped.
What do you wish people understood about you
and your condition?
I wish people understood that this condition is
not just tiredness, or laziness. I was a teenager who, at some point, did not
have this fatigue, and I remember how it used to feel to be exhausted, but feel
well-rested after a good night’s sleep. That does not happen anymore.
not something I, or anyone else who suffers from it, wants. Nobody wants to be
unproductive; I would love more than anything to willingly work off 6-7 hours
of sleep, and wake up at 7am to see a full working day. I do not enjoy spending
half my life in bed or sleeping, and I wish people wouldn’t view it as
something that could be fixed “if I just…”, because the main issue with Chronic
Fatigue is that it is a collection of symptoms related to energy levels,
tiredness and fatigue that don’t have a clear origin or solution.
There has not
been a medical answer that universally works for all sufferers. CFS is not the
same as someone having a busy day and feeling very tired, it is fatigue, which
means complete exhaustion all the time.
How could a platform like Patchwork Hub improve
your life and job prospects?
There are not many people out there who give
this condition the correct support, because of the lack of awareness around it.
Having a platform like Patchwork Hub is incredibly useful, as it means you
don’t have to explain to employers, tutors, or co-workers that you’re trying
really hard, but you just can’t work to the same pace or same time-frames as most
others, and need to find a system that fits both parties. Being able to find
not only flexible job opportunities, but also a like-minded community, is a
If you suffer, or think you might be suffering,
with CFS, you can find information and support at The ME Association.