Patchworker Spotlight: Will's Story

Chronic Fatigue Syndrome (CFS) 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 from it can find it an extremely alienating condition.

Recent university graduate Will has been dealing with the symptoms of CFS for five years. We 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 from 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.

Mentally, it 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 employers?

Not at all. I have never found a workplace or educational institution that has taken this condition seriously, and it's either perceived as laziness or caused by a lack of iron, vitamins, exercise, healthy eating, and a good sleep pattern…You’re therefore deemed unenthusiastic and a liability.

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.

This is 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 7 am 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 at 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 gamechanger.

If you suffer or think you might be suffering, from CFS, you can find information and support at?The ME Association.