The struggles of an invisible illness

Source: http://explorewhatsnext.com/hello-invisible-illness-awareness-week-2015/

'Chronic Fatigue Syndrome'

Focus on those 3 words, what do you perceive chronic fatigue syndrome (aka CFS or M.E.) to be?

I'm guessing, just like the majority of people, you're going to assume that someone who has CFS is consistently tired  and just needs to hit the hay earlier? I'm guessing you're going to assume that CFS is a pathetic excuse of an illness for lethargic people to utilise? However, what you don't know is that CFS is an invisible disability. Regardless of the pain, aches, exhaustion and occasional memory loss; unless you are diagnosed or experience this disease first-hand, you'll never even come close to understanding the terms of this debilitating illness, because it's practically invisible.

A couple years ago I was convinced I was dying. I had no idea how or why, but I had this gut instinct flashing warning lights in my mind. I felt trapped; I appeared perfectly healthy, how could anyone possibly believe my claims to feeling so broken? I could feel my body slowly wearing away, I could feel the life in me slowly being ripped out. I was 17 years old, internally feeling aged 90.

Studying for A-levels in college during this time felt virtually impossible. The brain fog and short term memory loss would often leave me confused and frustrated with my incapability to digest and memorise information being taught to me. I recall finding my psychology classes extremely tough; constantly being victimised for falling below my predicted grades, I was shamefully moved to the front of the class to 'benefit' my learning, but little did my teacher know I was fighting a disease, and little did I know either. Everyday after college I would drag myself straight to bed, sleeping through until the next morning. I had little time to revise because I was just about able keep myself awake and carry myself around throughout the day.

I was a teen feeling completely drained and defeated, completely unaware of what was happening to me. I would go about my days feeling beyond fatigued, bones weighing me down and constantly on the verge of tears due to my eyes struggling to stay open. Even on summer days i'd get so cold that my bones would feel painfully frozen and I felt unable to function. Working whilst battling this illness was a fight I refused to give in to - I'd even take energy tablets just to successfully commute  to work without fainting or losing my breath. Never did I want to be the person always complaining about being tired because usually the responses I'd receive were along the lines of 'I'm tired too'... no one would quite understand. I appeared perfectly normal on a daily basis, despite silently suffering on the inside and at home.

Unlike the regular human, the curse of CFS is that no amount of sleep will ever refresh you or make you feel 'better'. There is not yet an actual cure other than time.

Being so young, the hardest thing I've ever had to do was to learn to slow down and know that I couldn't do everything I want to do. During my worst phases I would isolate myself from everyone, mentally I was too exhausted to communicate, even texting was often too much for my frail self to handle. I would have to cancel plans often, with the pathetic excuse of feeling 'tired' (except it was much more than just that). Achieving things such as learning how to drive has been a battle in itself; on bad days, my inability to focus, react and remember would let me down greatly. Sometimes I'd get frustrated for not being able to keep up with my friends - I just needed to lay and simply do nothing. Absolutely nothing.

Chronic Fatigue Syndrome affects thousands of people worldwide. Each sufferer experiences this disease to different intensity levels, and in various ways. The physical symptoms of CFS can be as disabling as multiple sclerosis and extreme cases require full time carers.

After years of battling an invisible illness, time really has been the biggest healer. My development has exceeded my expectations, and finally for the first time ever I'm confident that one day in the near future I will feel completely free. I've shared with you, a tiny fraction of my story to raise awareness and provide hope to other sufferers out there.

Never question or challenge someone with an invisible illness, I wouldn't wish it upon a single soul.

By Hannah Goulding

Instagram: hannahgouldingxx
Twitter: goulding_hannah

Comments

  1. This comment has been removed by the author.

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  2. Hi Hannah

    Thanks for your awareness post. I wonder, did you get any Treatments like antivirals or immunmodulators?

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    Replies
    1. Hi Andrea, thanks so much for reading my post! With regard to treatment, I was diagnosed AFTER the worst of my battle had already happened. All they could do was CBT and advising how to manange my CFS.. i didn't feel that this would benefit me since I had been dealing and striving through years of it alone, I felt like there was no point basically because I had adapted my ways and my lifestyle as much as possible to suit my needs already. I was told I have low b12, so I take tablets for that and speaking to a lot of other sufferers, I wonder if b12 has some relation to CFS at all?

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  3. This is a great post! I really get it, I have a chronic illness too that doens't show on the outside, but really affects me. there are 2 other people I know who get it and one of them has Chronic Fatique Syndrome as well.

    What a lot of people tend to forget is that (chronic) illnesses are also mentally very hard, plus add the medication. It's not because it doesn't show, that is any less real

    I really hope you are doing better now x

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  4. How do you find you get through it? Do you find it is a matter of dealing on a daily basis? I am getting diagnosed but sure i have this. I have ruled out everything else and all my symptoms are very specific to this. I am both sad and relieved to find out that I could pin point what my symptoms are. Thank you for sharing your story with us!!

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  5. In China ,there is a new disease,people have a series of HIV symptoms after having sex.This disease is like cfs and
    It has appeared all of the world.you can find related information by searching unknown virus from medhelp.i hope who can help me can contact with my facebook 18019235146.please i am only twenty and I want to live

    ReplyDelete

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