IDW ~ 5 things I wish you knew about my invisible illness

Hi everyone!

For this post I really wanted to open up a bit about my invisible illness, ME/CFS. There’s a lot of stigmas surrounding any invisible illness, and particularly surrounding ME/CFS.

Previously referred to as the “yuppie flu” which people would “use as an excuse to get off work”, it is hard to break that stigma and for people to understand that it is a real condition.

There are so many people that suffer so extremely from this condition, people that are bedbound 24/7 and who have been for years of their life. There are people who can’t even move, eat or go to the toilet because of this illness. Yet people still don’t recognise it has a real illness.

So, to try and help you, my friends and family, and to anyone else reading this, really understand what it is I go through, here are 5 things I wish you knew about my invisible illness.

1. It’s there 24/7

I can never get away from it. I might have good days, but it’s still there. I probably suffer from at least one symptom every single day, if it is very mild. So next time you think I look “really well”, please remember that looking well and healthy, doesn’t necessarily equate to getting better.

2. It is so much more than fatigue

There are so many symptoms of ME/CFS, and I’m not going to go into all them in this post. But two of the main symptoms that I suffer from (other than fatigue) are chronic pain and brain fog.

Chronic pain is not every day. In fact, I can go weeks without having much pain at all. But then completely randomly I can be in pain every day, and you would never know.

Brain fog is something that affects me most days. Whether it’s poor concentration, struggling to remember small things, or muddling my words up, it tends to plague me every day. If you want to read more about brain fog, you can read this post here.

3. It can hit at any moment

I can think I’m having a “good day”. I could be having a great day. But that doesn’t stop me all of a sudden feeling really faint, dizzy and fatigued. As I’ve just mentioned, brain fog can hit at any moment, and so can fatigue.

4. It is invisible

You can’t see it. No one can. I can be experiencing the worst pain, the worst fatigue and no one would ever know.

On really bad days where I tend not to live my bed, let alone my house, I do look ill. But just like anyone would when they’re not well. There’s no physical signs. Unless you count big black bags under your eyes?!

Because of this, it’s easy for people to judge you. I can be sitting on the floor of a train (which I have done often) because I’m too weak to stand if there’s no seats and I can get the dirtiest looks off people. What they don’t realise is that, yes, I’m sitting on the floor, but if I didn’t, my legs could give way at any moment. They also don’t realise that by sitting on the floor, I have set myself up for at least 3 days of severe back pain. Something which I have to accept if I don’t want to collapse on the train.

So please, if you see someone acting a bit strange who looks like they’re perfectly healthy, they might not be. Please don’t judge them.

5. There’s no cure

Finally, there’s no cure. The amount of people who have asked me if I’m “better yet”. NO. I might be managing my health better, my health might have improved, but I am not categorically “better”.

This is an illness that might never go away. If it does, GREAT! But that might never happen. So when someone asks me if I’m better yet, it’s actually quite upsetting that they don’t realise that I may never be “better”.

Thank you so much for reading this, and I hope you enjoyed it! If you haven’t already, definitely go and read yesterday’s post where other bloggers share their stories with an invisible illness!

In tomorrow’s post, I will giving a little health update, where my head has been at and what I’m feeling right now.

Until then,

4 Comments

  1. Amylou Doherty
    October 16, 2018 / 5:02 pm

    Love this! I may have to write one like this myself, and give it to my family/friends! I love the examples you give! The one about sitting on the floor of the train, I’ve never really thought about myself! Also you look beautiful!

    http://www.chronicalsunflower.co.uk

    • Amy Saunders
      Author
      October 16, 2018 / 8:52 pm

      Yes you should!! I actually wrote this on my phone while I was stood on the train contemplating sitting on the floor so I was definitely feeling the pain!! Thank you so much lovely!!

  2. October 23, 2018 / 5:34 am

    I found this post really knowledgeable as well as helpful to get to know you better x

    I’ve nominated you in my bloggers recognition post if you want to check it out 🧡
    butterfliesandboundaries.wordpress.com/2018/10/23/blogger-recognition-award/

    • Amy Saunders
      Author
      October 23, 2018 / 7:37 am

      Thank you Hun! And thank you for nominating me! Xxx

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