Author: Zushan Hashmi
Just over 2 years ago, I was diagnosed with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), also called the ‘yuppie flu’, albeit derogatorily. I’m one of the lucky ones though, as my CFS falls in the lowest category, i.e. I can function well on most days and sometimes, for weeks and months without any issues.
Today, I work full-time, as well as run an online media business, do regular physical activity, and fortunately live with two very supportive family members, my wife and my sister.
What is CFS, you ask?
Well, think of the worst fever you’ve had, but there are no signs of it improving. While you may not be burning up, your body is giving its all to fight off something it thinks is damaging you, and you are always tired, no, scrap that – exhausted, beyond reason.
Think of the brain fog you get alongside a high fever, but it becomes difficult to watch or read something because that is too ‘strenuous’ an activity for your body.
Think of the time you competed in a long race, or played a fast-paced sport and at the end of it, your muscles and joints were aching. Now imagine that across your whole body, the pain prevalent in all your muscles and joints, sometimes, for days and even months on end.
And with this of course, comes self-doubt, questioning your worth, your existence and your very being.
CFS is a complex, multi-symptomatic illness that takes 6 months to diagnose (yep, because there’s no means to diagnose it directly, they have to cross everything else off) and patients can fall under one of three categories, mild (which is where I fall), moderate (not being able to go out or work) and severe (staying in bed at all times).
Causes of CFS may include bacterial infections, such as pneumonia. problems with the immune system. a hormone imbalance. mental health problems, such as stress and emotional trauma.
They say the mental health impacts of CFS are due to what an individual suffers, and when you go from being a physically active, outgoing and busy person to sleeping 16 hours a day and still feeling miserable both mentally and physically, everything you once thought of yourself changes. And it impacts your mental health like no tomorrow.
Let me run you through my story, like I said though, I am one of the lucky ones, I am recovering and managing things far better than when I first faced the wrath of CFS.
A couple of months into 2018, I had moved to a new city, and the climate didn’t suit me very well.
In a span of 4 months, I fought off close to eight or nine bouts of the cold with at least two or three of the following symptoms at all times; a sore throat, fatigue, muscle and joint pain, post-nasal drip, mucus, and fevers and coughs.
Initially, doctors either said ‘don’t worry, this is normal here’, ‘you’re adjusting to the weather’ or ‘get over it, it’s just a cold’. Mind you, I live in Australia.
I then had doctors tell me everything from it being throat cancer to muscle dystrophy. Finally, I found a doctor who worked with me over the next 6 months to diagnose the condition: CFS.
What on earth is that, I wondered?
Well, initially it was 16 hours of sleep a day and I was still exhausted, my sore throat wouldn’t go away, I had to stop my active lifestyle and refrain from physical activity. What was, perhaps worse was the mental side of things.
I would regularly question what my life was worth, whether I would survive whatever this was, and if I would ever get active again.
That’s when someone (my now-wife) suggested I see a psychologist to talk through what was going on. Through cognitive behaviour therapy, I was able to recognise that not everything was doom and gloom. I just had to slow down, accept what I was going through and take baby steps on my journey to recovery (I am still taking baby steps).
This was not, by any means, the end of the world.
Yes, it’s a bizarre illness.
Yes, it has a myriad of random symptoms, as their tenacity and impact vary from person-to-person, but no, they’re not the end of the world. And this acceptance has enabled me to adjust and improve my health in the long run.
What was not surprising at all, perhaps, was the reaction of some friends and family. I never had anyone say ‘he’s faking it’, but suggestions to try tons of herbal, hakimi medicines is still normal. It’s far more common to hear ‘it’s all in your head’ or ‘Western doctors have made this up’.
One of my favourite ones has been – ‘tension naa lo, saari mushkilein duur hojayengi shaadi karke’. And another was ‘you’re right, you should stop rock climbing, you don’t want to fall asleep on top of the mountain!’
While the stigmas, lack of awareness and simple disregard are prevalent, and can very much impact your self-belief and resilience, accessing the right support, finding other individuals in similar situations and not resorting to ‘Dr Google’ (as I once did) every time something new happens, you can pick things up, and start the long walk on your road to recovery.
It may take more time than it has for me, and it may be far quicker. But what I’ve realised is, being able to recognise when my body is down, when I need to take things easy, and when I need to respect myself, mentally, and seek the help I need, the better I come out and the better I am in the long run.
My ‘yuppie flu’ might be a part of who I now am, and for some it may go away for good, whereas for some the impact of the illness may increase, whether I fall in either category I am learning to respect who I am, and figuring other things out in my life, things that may not have crossed my mind before I was diagnosed with Myalgic Encephalomyelitis.
You can get in touch with Zushan on Twitter – @zushanhashmi