Something a lot of people don’t know about me is that I live with chronic fatigue syndrome/ME. I guess the reason why not many know this is because I’m not as open about it as I am about my vision impairment.
When I was first diagnosed with CFS, I was 15 years old and, in all honesty, despite having symptoms of the condition for a year before then, I didn’t know what it meant or what the future would hold for me with my newly diagnosed condition.
Before I started having symptoms of chronic fatigue syndrome, I wasn’t really sure what it meant for people and what would be ok to say or not and I think the same goes for a lot of people. At the end of the day, it’s all about learning from each other.
When you know someone living with a chronic illness, it can be hard to know what to say to them. I want to recognise that a lot of people who say the things I’m about to list have the best intentions and often, people want to appear understanding, sympathetic or helpful but, sometimes, it doesn’t always come across that way.
I don’t want to write this to cause offence to anyone and I’m hoping it will help to shine a little light on the things that can sometimes be frustrating or hurtful to hear as someone living with chronic fatigue.
I know how you feel
Unless you also live with CFS/ME or any other chronic illness, it’s really hard to relate to or understand how a person might be feeling.
Chronic fatigue is so much more than just tiredness. I can’t speak on behalf of everyone but for me, it’s exhaustion on a whole new level and it is often coupled with extreme weakness, headaches, brain fog, feeling light headed and fainting sometimes.
If you want to sympathise then perhaps a better way of going about it would be to say something along the lines of ‘I’ve been feeling exhausted recently, I can’t imagine how you must be feeling.’
Chronic fatigue, that’s just tiredness, right?
Unfortunately, it’s so much more than that. As I said, for me, it causes extreme weakness, fainting and so many more aspects. There’s so many more layers and contributing factors to the condition than meets the eye.
You don’t look ill
Not all illnesses are visible but that doesn’t mean they’re any less valid. Most of the time, people just don’t see the full picture.
I’m quite glad that I don’t look how I feel because, when I’m having a flare-up, I often feel like a zombie being weighed down by a heavy backpack, making it extremely hard to move – I’m really glad that doesn’t manifest on the outside.
Also, a bit, ok a lot, of concealer and bronzer can work miracles.
Just do some exercise
I’ve been told before that if I got some exercise or went to the gym then I’d feel so much better, that it would be some magical cure and I’d feel like a new woman. But, that’s really difficult when I don’t have any form of energy to do those things in the first place.
Some days, it’s a struggle to walk up the stairs, that’s not because I’m unfit, it’s just because of what my illness does to my body.
I like being active on days which are ‘good days’ and I’ll go for a walk if I can, even if it’s just a short one and I do some indoor exercises which were recommended by a physiotherapist a couple of years ago.
I’ve learned what my limitations are now and I’ve been able to do more as I’ve become a little stronger this year but if I push myself too hard, I know how damaging it can be for my condition so I do have to keep a good balance.
Have a nap, you’ll feel better
If only it was that simple. Unfortunately, I’m not going to wake up feeling all bright eyed and bushy tailed after a nap or a night’s sleep. Sometimes, naps make me feel even worse so I steer away from having them.
You’re so lucky you get time off school
This doesn’t apply to me anymore because I’m no longer in school but it was something people told me quite often when I was.
I didn’t consider myself lucky in any way and, to be honest, I was quite gutted on the days I couldn’t make it into school because I wanted to do well and I hated the thought of missing work and falling behind.
Have you tried herbal remedies? I think they’d really help you.
I’m not sure I’d want to try them even if I didn’t have chronic fatigue! And, to be honest, I think it would take a lot more than a herbal remedy to make me feel better.
Why don’t you just get on with it?
Some people just see the tiredness that coincides with CFS, they don’t see the extent of that tiredness and don’t understand how debilitating the condition can be. Trust me, if I could ‘just get on with it’, I would.
I know this person with CFS and they do this and that so why don’t you?
Even if someone has the same condition, it doesn’t mean that their symptoms are going to be the same.
There are varying levels of CFS/ME, it affects people in different ways and some people might find things that help them but it doesn’t necessarily mean that it will help others, it all comes down to unique experiences.
You look good today, you must be feeling better
Looks can be deceiving, trust me.
I know this comment is often said with the intent of being a compliment but sometimes it can be reflected as a lack of understanding.
Living with chronic fatigue for a while has meant that I’ve become better at being able to conceal how it’s making me feel.
I know that a lot of the things I’ve listed here are said with the best of intentions and people are merely just trying to empathise and perhaps, trying to understand in their own way.
Whilst empathy can go a long way, what really makes a difference is when someone asks me to explain my condition and how it affects me, when they say they want to gain a little more understanding. Whilst I don’t always have the energy to comb through the finer details of how CFS affects my life, I will always try to explain as best as I can.
I’d rather people ask questions than avoiding them and then, perhaps, making unnecessary assumptions which lead to all of the above being said.
Chronic fatigue can be lonely at times, especially if I miss out on doing things because of how I’m feeling. So, having people around me who are willing to understand is invaluable.
Not everyone knows what to do or what to say but I hope that posts like this can help to shift social attitudes and contribute to more awareness being raised about chronic illnesses.
Is there anything else that you hear a lot of as someone living with a chronic illness? Things that you don’t think is the best thing for someone to say? Let me know as I’d love to hear from you.