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The battle you don’t see: Living with Chronic Fatigue Syndrome

MyblurredworldMyblurredworld Member Posts: 11 Courageous
edited August 2019 in Guest blogs

I’m Elin, the creator and writer of the disability and lifestyle blog, My Blurred World. It’s an online space where I share my experiences of living with a vision impairment, amongst other things such as beauty and fashion, in the hope of raising awareness and helping others in a similar situation. I’m also a student, undertaking a degree in Arts & Humanities (specialising in English Language and creative writing) with The Open University.

My vision impairment is often the first thing people learn about me when I’m out and about, my long cane is a bit of a giveaway, but that’s one of the reasons why it’s there. Some people are quick to question me about sight loss, it’s a foreign concept to many after all and I guess the fact that my disability is a visual one, to some extent, means that people are intrigued and therefore eager to question and learn. It’s meant that I’ve become more comfortable when answering some questions, it’s almost as if I’ve drawn up a script for the most frequently asked questions that I receive.

 

But whilst my vision impairment is quite an identifiable aspect of my life, what people don’t see is my chronic illness, chronic fatigue syndrome (CFS) or myalgic encephalomyelitis as its otherwise known. A condition which brings about much confusion when brought into conversation because, according to some, I don’t ‘look ill’.

I can sense so much confusion surrounding chronic fatigue and that’s why I think it’s important to highlight people’s experiences, especially since it’s such a variable condition. The symptoms and their severity vary from person to person and whilst mine might not be as severe as others, it doesn’t make them any less valid.

CFS has been a battle I’ve faced since I started having symptoms aged 14. When the official diagnosis came in the next year or two, it was a relief, knowing that I wasn’t crazy and that it wasn’t all in my head. Whilst some of the weight was lifted, after my diagnosis and despite a referral to a physiotherapist, the pain and exhaustion persisted and my world as I knew it turned upside down.

My chronic illness has had a detrimental effect on me mentally as well as physically. I missed over half of my first year in sixth form because of what CFS was doing to my body. I gradually entered a life full of limitations, I missed out on spending time with my friends because I didn’t have the energy to go out and this resulted in the feeling of isolation. It all felt very cruel in a way, some teachers didn’t understand why I was missing so much school and I was finding the condition difficult to comprehend and explain to others. This was due so many believed that ‘it’s just tiredness’, yet that’s another nod to the misunderstanding that surrounds invisible illnesses.

 

Now, although I find myself in a slightly better position with CFS than I was a few years ago, the symptoms are still a prominent part of my life and the flare ups can leave me bed bound. Picking my phone up and typing a text can be a challenge and no amount of sleep takes the exhaustion, weakness or light headedness away.

It can be debilitating.

I often need to conserve my energy, prioritising things I need to do, places I need to go, and I have to maintain a strict balance in my life. It’s both physically and mentally and it means I lead a life you don’t often expect an average 20-year-old to have.

Through living with chronic fatigue and a vision impairment, I feel like I experience both ends of the spectrum when it comes to living with a visible and invisible disability and what consequences this has for me. I’ve come across people who feel much more comfortable when asking about my vision impairment, but they’re often left confused if my chronic illness is mentioned. Surely, I can’t be chronically ill if there aren’t any visible signs?

But despite coming across different attitudes towards both my conditions, they are both still so often misconstrued, and this is why I believe we need to open the conversation, raise awareness, educate and help each other.

Do you ever feel like attitudes towards visible and invisible disabilities differ? Have you ever been misunderstood because of symptoms you have had? Let us know in the comments!

Replies

  • RoddyRoddy Member Posts: 389 Pioneering
    Hi Elin @Myblurredworld, Thank you for sharing Your story, which I found to be a very informative read. I'm pleased that you have at least faced your disabilities 'head-on' (having received a diagnosis) as best able. 

    I have always said that there are so many situations when a person doesn't 'appear' to be disabled at all, but can in fact be quite seriously ill or have a hidden condition. I struggled with this whilst I raised my son for example. He was and still is an adorable 'looking' lad. A "real head-turner" as folks always say, and I'd always hear passing comments when out and about with him... and then again, when or if His autistic & associated disorders displayed themselves, which would take people by complete surprise whilst also 'changing' their opinion of him quite dramatically at times.

    Further down the road to today and now, I have also experienced this same kind of attitude towards myself personally. 5 years ago, I was a fully able bodied man and without any health issues at all. I had more friends than I could count and I was always well received within my community etc. However, since I am no confined to staying indoors at al, times due to mobility issues & tiredness, I hardly see another living soul unless I go out on my mobility scooter which whenever I do is met with the same kind of negative attitudes towards me. Or, that's how it feels... 

    Just like my son, I have been blessed with 'quite good looks' and I'm always dressed smartly etc. Apart from my obvious inability to walk far unaided, nobody would think that I was disabled at all or suffering inside from illness. I've seen the looks, and I've witnessed the gossip such as "what's wrong with YOU then" "You look FINE to me" and so on, and so I think that this is where most people fall flat: They think with their eyes and have a blinkered attitude to anything that they are unable to see... To be honest,  I don't have anything to do with such judgemental people, as nothing that I say or do will ever educate them.

    I seriously believe that  EVERY grown adult should experience being disabled for just one day. Unable to use their legs or hands, walk or run and yes, even blindfolded for an afternoon or confined to a wheelchair whilst they try to cope and get through THEIR average day. Only then perhaps will all people truly understand what it is to be disabled and how, as a non-disabled person they can treat us all as like-minded souls where the word 'disabled' doesn't mean a single darn thing in terms of our value. 
     
  • MikaMika Member Posts: 9 Connected
    Hi, you sure a brave and most beautiful young girl to have suffered as you have. Your positivity is outstanding and you are a true inspiration. Keep up the good work. I suffered 2 strokes within 3 weeks of each other, that has now caused my fibromyalgia to flare to 90% constantly. I cant leave the house alone so I spend my days looking at the same 4 walls which can get very suffocating. When the weather is good my garden is my haven. We also have a caravan sited where its another safe haven and I spend my weeks looking forward to that. Only we that suffer can understand how you feel, any disability whether seen or unseen needs courage and bravery to deal with ourselves, let alone having to explain to others. So now, I just don't give a damn about the people who don't give a damn about ME! I have created a beautiful unicorn bubble to keep me protected hahaha, but then, we can all be who we want to be. Well done xx

  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    My youngest daughter was under 18 weightlifting champion but kept suffering bouts of illness which was diagnosed as CFS soon after. Unfortunately, 10 years later, she is still in denial that it is the same as ME and especially that it's a "for life" condition. She is better at handling it but still does too much at times trying to be "normal".

    She is married now in her mid 30's and has a little girl and a "mostly" normal lifestyle. I am proud of her even though she is no longer in contact with me. Having a chronic illness and being around me with mine is just too much for her to cope with. I only know how she is doing via Facebook.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,597 Scope community team
    edited July 2019
    Invisible impairments seem to get met with a lot of scepticism. It's not something I speak about a lot, but I was also diagnosed with CFS (among other things) at the age of 14 and I quickly gave up explaining, because everyone's answer was just to 'go to bed earlier'. Since nobody else could see or feel it, it was very easy to become convinced that it was all in my head, or just something everybody had that I wasn't able to handle.

    Fantastic blog @Myblurredworld. Thank you for sharing it. I hope you're enjoying your degree. How's your experience of studying with the OU been?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello. 
    My son has Spina Bifida. When we are shopping or doing normal family activities I have noticed he gets a lot of attention. I have been asked questions too. He also has dyscalculia. I rarely tell people about his impairments. It is a tricky thing isn’t it? Recently we were in Kent and I saw people look as he wheeled himself about. Last year we were staying on a campsite and again people looked. It is not often you see a little boy using a wheelchair. 
    I’ll have to read your blog. Can you tell us more about your OU experiences or not? 
  • LifeOfPippaLifeOfPippa Member Posts: 15 Courageous
    Such an interesting read @Myblurredworld, can definitely empathise with the relief of finally getting a proper diagnosis! 
  • Louise2001Louise2001 Member - under moderation Posts: 24 Connected
    So interesting. I was diagnosed at 5 years old with spastic CP something my family had never heard of before then. My kind of CP is rare, spastic monoplegia. Only one of my legs rather than two on the left side of my body was affected at birth. 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Thank you so much for sharing @Myblurredworld :)
    Scope
    Senior online community officer
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Thanks for sharing your story with us @Myblurredworld
  • Connie00Connie00 Member, Community champion Posts: 255 Pioneering
    Hello to you all out there who are suffering one way or another, @Myblurredworld how wonderfully written and thank you for sharing your story I myself suffer with Asthma Fibromyalgia, Rheumatoid Arthritis, CFS and FND, (functional neurological disorder) and a lung disorder which completely fails me when I have an asthma attack.

    So, I live most of my days in pain, I can relate to where you are coming from, sometimes it gets the better of me, and sometimes I’m not sure which one is playing up more, difficult to know, so I really have empathy for you. 

    Like you say some of these illnesses are invisible so people do think you are pulling a fast one, if they are lucky enough to catch you on a good day, for me these are rare, and you have just put your blue badge in your car window screen oh yes we have all been there.  You can hear them say nothing wrong with her look at her, taking liberties, and these are acquaintance that I know, they think they know me they don’t, its been years since I have talked or seen these people, a lot changes in the later years, or even in a few months for some. The body is a complex machine and so much can go wrong, it doesn’t matter how old you are.  

    People who don’t understand this just like to judge, and gossip, its hurtful its cruel, nobody wants or chooses to live like this. Why do people have to be so cruel what a waste of energy. It could be well received saying or doing something nice. Don’t people know that when you are in pain it changes you whole persona, you take on a new character, most likely one you don’t like, and when you come across malicious people, its so very hard not to go down to their Level.

    But we must rise above this because in this world there are a lot of people that are a lot worse of then us. We are lucky we have Scope on line forum we can communicate with others,

    If you are lucky enough to have close family that help you and support you that’s an extra advantage. Many don’t have that luxury so that’s one thing to be thankful for, here at Scope we are a family and its nice to feel the warmth from everyone. I don’t think I have ever felt this before.

    When I am in Pain and I come on here,  I can  share with my good Friends they support and understand me, I also support others who are in crises or just want to talk or advice, this is my go to place.

  • MikaMika Member Posts: 9 Connected
    You are right in everything you say. I couldn't have expressed it any better. xx
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