Chronic Fatigue and Lasting Friendships
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.
Drawing by: Laura
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
• Insomnia
• 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.
crow says:
Dear Laura,
Thanks for sharing this with us.
I’ve had M.E. for sixteen years now. There is no doubt that it’s an isolating illness. You definitely find out who your friends are. But, here’s the nice thing – any friends you meet from now, you know that they’ve become friends knowing you have M.E. I’ve met some of my absolute best, lifelong friends SINCE having M.E. I’ve even fallen in love and gotten married.
They may not totally understand. To be honest, I’m not sure I’d have understood this illness until it happened to me. Hell, I have it, and I still don’t really understand it! But they’ve never made me feel bad for rearranging coffee…for the third time. I feel understood, even if none of us really understand M.E.
I agree, there’s not really such a thing as invisible illness…most people just aren’t looking closely enough. The signs are there, if you look hard enough. The amount of discussion to be heard about whether M.E. is a real illness is incredible and disheartening. I can’t think of many other illnesses where this kind of debate is had…But things are getting better. (I don’t know how it is over there in Australia, on a day to day level, but global research findings gradually filter around the world.)
Have you heard of the spoon theory? If you haven’t – it’s a really lovely way to explain to people what it’s like to live with a chronic condition.
All those cat videos may be a giant distraction, but the internet is a blessing. There are lots of us drifting about on Twitter and Facebook. Within my circle of ‘real life’ friends, there are, coincidentally, a few of us who have chronic conditions. We rarely physically see each other unless we have ‘good’ days that coincide. So we mostly keep in touch online.
I thought I could never have ‘a life’ with M.E. Actually, i was so wrong about that. I found what I really love to do – being creative. That I have an illness has become a secondary thing about me. ‘How are you feeling?’ is no longer the first question people ask me. It’s ‘How’s the writing going? How’s the photography going?’
When it comes to friends it’s quality over quantity. As humans we’re designed to only have five really close friends. If you have three already, I’d say you were doing just fine.
Whatever the illness, friends are the best medicine there is.
Regards
crow
X
KIara says:
Hi Laura, I also have CFS and fully understand living with hidden disabilities. CFS also has changed the direction my life was going in and the relationships I have. I totally agree with you; friendships are a so valuable… I discovered who were true friends when slapped with CFS and I love everyone of them. I also made some amazing CFS friends online and have had my eyes opened to the challenges faced by people with CFS. My sign off is for Laura and any other CFS victim…. Enjoy some guilt free rest, cut some corners and leave the house work alone! Kiara xx
Yoda says:
Thank you so much for the lovely comments! It’s so nice to talk to people who understand – as much as anyone can. All my friendships are maintained online as well, even though most of them live very nearby. As for coffee outings, coffee actually makes my symptoms suddenly increase for the rest of the day (but tea doesn’t have any affect on me).
I’ve been trying to teach myself how to rest properly but it’s very difficult because I have very poor impulse control. And in my part of Australia, every doctor seems to think that the best thing to do is lecture me about eating vegetables and doing exercise until my mum and I both cry. The worst part about that is that we have to pay for every single appointment. Which is another reason why the internet is fantastic – I can use it to find out how to take care of myself.
Xybyt says:
Thanks for this post, Laura! I suffer from CFS as well and am struggling to cope or just make appointments. Like I have had ‘Calls’ written on my To Do list since before Xmas to remind me to make a specialist appointment to get an ‘official’ diagnosis so Centrelink will believe what my GP says about me not being able to work or study due to this debilitating illness. Sure, I could *maybe* work a few hours a day but not on any kind of schedule or with any kind of reliability… Online support is definitely something I would be much worse off without, it’s a lifesaver, definitely.
I’m not sure which advice I loathe the most – that I should ‘do more’, ‘do less’, ‘eat more’, ‘eat less’, ‘pace myself’, ‘exercise’ (HA!). I’ve tried everything, changed my diet a couple of times, changed medications, stopped taking medication, done ALL the things and, of course, nothing helps in any way at all and nothing changes.
Anyway, I really appreciated your post this morning and hope you have as lovely a day as is possible with CFS. Raccoon eyes and all.
Yoda says:
The best advice for managing life with CFS, I think, is that it is not straightforward at all and our needs can change a great deal from day to day. I’ve recently – thanks to Touretteshero – began to treat my condition as an impairment which causes me to be disabled by society. So as with any disability our goal is to make life and everything in it more accessible until we can get a cure. And I’ve been doing a lot of research. I want to get CFS treated as the real condition that it is so that we can all be provided with the correct support. For some people, maybe even a wheelchair could be a good idea, to avoid using up energy on walking when it is needed for other things
AuntieCath says:
Thanks so much for your blog. I have had CFS/ME for around 10 years. I also have severe reflux, an hiatus hernia and ulcer. I’ve also had several surgeries on my back for prolapsed discs and sciatica. I’ve also suffered with severe depression for many years. I don’t have any friends-at all. Why would I want to inflict myself on anyone when I’m always so tired and miserable? I don’t want to sound defeatist but I’m really struggling. Could you recommend any sites where you have found some support. I’d really appreciate it. With thanks.
Yoda says:
I personally don’t know of any actual support websites so everyone who does PLEASE speak up.
I understand how CFS can cause self-hatred, and similar feelings. Stomach problems can definitely do that to. So please don’t feel even worse about yourself because of feeling that way, it’s actually perfectly reasonable to be scared of hurting people. But it shouldn’t be. You deserve and need just as much care and love and respect as any other living creature. There is not much I can do for you except to say that there are definitely people somewhere in the world who understand what you have to deal with and can be there for you. I understand some of it, and I want to help, so that’s one person already! Thank you for telling a little of your story, it’s so important for us all to be able to speak about this sort of thing