The invisible part of invisible illness.

I wish pain was luminous green like a glow stick, or at the very least more like the people in adverts with the glowing red blobs that are going to be banished thanks to a pill or gel. If everyone could see pain then there would be no doubt and people with unexplained pain would not be judged at first glance to be drug seekers or hypochondriacs. People like me who have widespread pain wouldn’t have to pick one thing to complain about, to the exclusion of all of the other ailments that plague us at that moment in time.

I wrote a paragraph about the precise pains I deal with day in, day out and then I realised that I don’t need to explain myself, at least not to the people who are likely to read my blog.

It’s not that I want to constantly complain about everything, but that I wish people realised that just because I’m not complaining about pain, doesn’t mean it’s not there. If I told someone every time my acid reflux was causing me serious discomfort, I’d never speak about anything else. Most people think that constant reflux isn’t the end of the world… but they will also be the ones scrambling through the kitchen drawers for a Rennie when they get their annual dose of heartburn after Christmas dinner. Yes, it really does feel like you want a little minty green man to come and hose down your oesophagus with magical pink, cooling goo. I feel like that 70% of the time. Let’s not even talk about what happens at the other end of my gastrointestinal tract.

So when something does get really bad, to the point that I’m incapacitated, I look like a drama queen. It can’t be that bad because I seemed okay yesterday or I managed something earlier and must be over-reacting by saying I need help now. It doesn’t tend to cross anyone’s mind that “managing” does not mean “pain free” for me. I managed to go and watch my family have a fun night bowling the other week. The preparation for this lasted two days, it took me three hours to get ready, J had to iron my outfit and help me hobble around. Then I suffered for about five days afterwards. Yet, because I “managed” to be there, I must be over reacting the rest of the time…

I think I’d glow a bit like this at times… (original art by Gesine Marwedel)


It’s beyond frustrating. I wish it was as simple as cutting out the people who don’t believe you, but it’s unfortunately not that simple. People with chronic, invisible illness are walking uphill, in flippers, through peanut butter and that’s just trying to get the treatment we need. I can’t think of a way to describe the mental mind fuck torture of knowing your loved ones doubt your suffering, even just a little bit.

So yes, I wish I glowed neon from every ache and pain. I wouldn’t have to explain myself when I ask for help and I’d never again need to feel the gut wrenching disappointment of knowing someone thinks I’m a liar. Also, our electricity bill would be lower and I’d never need a reading lamp again. And old people might stop giving me the stink eye when they think I should give up my seat for their perfectly able selves – I could well and truly live without that.

Ren x

4 thoughts on “The invisible part of invisible illness.

  1. bowermanland says:

    Until my Dad saw me limping across the road one day & my Mum explained that my pain was like his gout, but every day, all the time, he didn’t get it. He still doesn’t really (‘How can you have a headache every day’) because he can’t understand how I cope. People can’t believe that people in constant pain like you are alive and coping – because they are scared of pain and can’t imagine you can function with it. But they also don’t understand that our understanding of pain and ‘functioning’ is different from theirs. I just wish we were allowed an official card or badge to wear so people didn’t have to ask and that proved there was something actually wrong. It would also help with getting a seat on the bus without feeling guilty.

    Liked by 1 person

    1. brokendownbody says:

      Dads really don’t get it, eh? My dad commented a few times about me needed help from J when I’d managed earlier… Now he just doesn’t say anything but i know when he’s thinking it 😄 it’s funny how people forget that we’re not stupid, and we know when we are being harshly judged! X


  2. brendaflippen says:

    Reblogged this on brenda's Blog and commented:
    This is me. No I didn’t write it. I don’t write this well. So thank you “brokendownbody”! Thank you for describing how I feel.
    This definitely needs reblogging!! Now let’s all pay attention and read quietly in case someone needs it explained to them. Although this is very straight forward ,i m o.

    Liked by 2 people

  3. Ms. Mango says:

    So much yes! We shouldn’t have to explain ourselves or validate our pain to anyone, honestly even our doctors (if anything it’s due to a very minuscule number of drug seekers that doctors can’t trust legitimate pain patients). Even so, we deserve to have a general understanding that we are in constant pain without having to talk about it, complain or prove anything. I too feel like when I don’t talk or complain about my symptoms they are completely ignored and my family and friends treat me like I should be able to keep up and continue on like nothings wrong. I don’t want to HAVE to talk about it all the time to them or anything else, its exhausting. Glowing pain signals would be a great help, not to mention a useful nightlight when I have to hobble to the bathroom 4 times a night 😉

    Liked by 3 people

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