During the last six years spent a part-time superhero I’ve met a great many others who are on missions of their own. Yesterday guest blogger Kaira took control of the blog – today I’m going to hand over to another talented young writer. Laura got in touch about her experience of having Chronic Fatigue Syndrome. So I’m passing the blogging baton over to her.
Hello, fellow superheroes!
My name is Laura, I live in Australia and I have Chronic Fatigue Syndrome (CFS). Also, I suspect I have ADHD and am seeking a diagnosis. I’m here on Touretteshero’s blog to tell you about my experience of life with this ‘invisible’ impairment.
Although I don’t know much about the science of CFS (no one does really), I do know a great deal about what it feels like and how other people react to it, because I’ve been trying to deal with it myself for eighteen years – my entire life.
The first thing you need to know about CFS is that it is much more complicated than just being tired a lot.
As with everything, symptoms vary from person to person but the common and most noticeable factors include:
• Constant tiredness
• Muscle and joint pain
• Other physical pains – like sore throats
• Minor malnutrition
I don’t know anyone else with CFS so I have nothing to compare my symptoms with, and there are a great many of them. Sometimes it can be hard to tell which of them are connected to CFS and which aren’t. I also have had severe reflux since infancy and an abdominal hernia (my stomach is in the wrong place and it hurts all the time), so eating is a big problem for me, which contributes to the malnutrition.
Not knowing anyone else with CFS also means that most people don’t understand my needs and usually don’t try to. I can’t do chores or sports because I’ll become feverish or even collapse. I can’t eat good food without a huge amount of pain. The lack of energy affects every part of my body, even my bladder and my eyes, so I need the toilet a lot and my eyes won’t focus properly on anything without glasses. My skin’s sore and damaged, there are big grey circles under my eyes, my legs are wobbly and my hair falls out. And yet people still think of CFS as being invisible!
Eight years ago, my symptoms very suddenly became fully evident and I lost the energy I needed to attend school. I loved everything about school (except being left out a lot) and it was heartbreaking when I realised I couldn’t cope with it. But no one else cared about that and for months I was physically forced to attend, often in my pyjamas, and was left in a corner of the classroom all by myself, crying.
But I was able to convince my mother that I couldn’t manage and together we started the quest to fix things. I’ve always thought of myself as ‘sick’, and ‘suffering’, but this isn’t because of the way society treats impaired people, it’s because I’m not able to do what I want with my life.
I’ve lost many friends and made very few new ones. A lot of people mock CFS, claiming it isn’t real. But there are a few people who have listened to me, respected me and become my friends as a result. One of them is from long ago at school and has always stuck with me, one I met a few years ago and she’s given me more of her time than seems reasonable, and another who I met online, lives in America, and has given me so much support and respect that I’m grinning as I type.
With all of them there are still problems caused by misunderstanding around my condition, and the general tensions of friendship, but I’m so proud to have these people in my life. I’m often amazed at how strong my tie is to someone I’ve never even met face-to-face, because of her loveliness.
My constant struggle with pain and exhaustion has impacted on my whole life, including influencing who I love, and the things which make me happy. And even if I never have the energy to work or play, I know I can still be happy because of the wonderful people who have been brave enough to reach out to me and listen.
Friendship has played a really important role in my journey with Tourettes too, Laura. I wish you happier, healthier times and many more strong friendships. Thank you for a thought-provoking post and for sharing your experience so openly.
Like Laura I feel strongly that understanding around disability needs to be widened so that people with hidden impairments can be better recognised and supported.
Please do share your own experiences or messages for Laura in the comments section below.