It isn’t contagious: Living with an Undiagnosed Chronic Illness

Don’t mind me
I cried myself to sleep last night
It isn’t contagious
the worst you’ll come away with is a heart
or at the very least discover the lack of one.
The only thing even close to contagious is the hope I feel
and yet you try so hard to diminish it.
I can tell it annoys you that I’m broken but I haven’t given up
It’s easy for you
you can make judgements but you don’t have to live with them for the rest of your life
You don’t continue to feel this pain for years just wanting to live and do normal things without constant regret.
I make your job difficult and you act like its done through choice
don’t send me away with nothing and expect it to all just disappear like a dream
a nightmare
you want it to be cleared up for all of the wrong reasons.
I’ve been left to face those that act like it doesn’t exist because it hasn’t happened to them
They wondered why I stared into the distance after a sleepless painful nights and said I was bullied, abused, depressed, making it up
All because I couldn’t explain how it felt under their watchful gaze without wanting to cry as they weren’t open to understanding.
They tried to bring me down and put me in a little box that they could easily label and yet I’m still here
Looking for diagnosis that covers these illness’s, that gives something to help them, that stops them progressing, that gives support
I’m looking for a name that let’s me live and be in at least some control of my own body.
Excuse me if I want to live without consequence and fear.
I want answers but on the never-ending journey towards them what I need is respect.

Thank you for reading! 😉 I recently mentioned that I was thinking about doing a health update seeing as my last one was in January but I decided against that despite writing one down as I can’t bring myself to type it up. Recently whenever I think it all through I start to cry because I can’t help but think this is how it will always be. Constant excruciating flare-ups and hope evaporating just when you think it has a chance of changing. It’s a cycle as the physical will bring on mental aspects and likewise but you get scared to mention otherwise as thats what you will be put down as and you’ll be stuck making things easier for them but not for you (them being doctors).
I wrote this poem under my living with an undiagnosed chronic illness series (I will link the rest of the series at the end of this post) because not wanting to write an update I didn’t want to do nothing at all and go on acting like all is well when in reality it’s far from that. I don’t speak about it as much as I should in real life but I want to change that and get into expressing it through words like this, like I used to because I need to remember how good it is to vent, especially when it’s harder to cope than usual.

To anyone reading this that is undiagnosed I want you to know that you’re not alone. You will get the answers you deserve one day but until then do whatever you can to stay you, to hold onto who you used to be even if you can hardly remember how things were. You are who you were then and who you are now, you’re more for through going through these two different lives despite them becoming a half life for now. I know that it sounds silly to call you strong or brave because you have no other choice but to keep going but truly you are both of these things ❤ Thank you for reading and I hope you have a beautiful day! 🤗

Other posts in this series:
Waiting
A Name
Trigger
A constant reminder
Living a half life
Invisible me

📷Follow Me🐦
Instagram
Twitter

12 Comments

  1. Really beautiful. I searched for 23 years before I got a diagnosis. Weird to feel relief at being told you have an incurable, degenerative neurological disease. The limbo and the implication from so many doctors that ‘it’s all in your head’ (too ironic) is so demoralizing. Great of you to share your experience and encourage others going through the process.

    Liked by 1 person

    1. Thank you so much! That really gives me hope that one day I will finally receive answers. I can understand why you would be relieved, the belief side of it would be somewhat put to bed, it probably wouldn’t shut those doctors up as they don’t like to be proved wrong but they would know that they were all along. I really appreciate that, I hope you’re having a lovely day 🙂

      Like

  2. This broke my heart because the ignorance and not willing to listen of some people can be so hurtful. I’m glad you’re speaking about this because the more you speak out, the more people learn and the more people understand. Spreading awareness about how you feel is so important and people should always always respect that what you’re going through can be hell some days and is a fight, not some kind of thing to have with no consequences. I’m not going to give you the ‘you’re brave’ speech because that can be so patronising but just know that I admire you because you let people know what the world for you is like xx

    Liked by 1 person

  3. This is really a beautiful poem 😘 I can understand how hard it may be to live with an undiagnosed chronic illness. I hope you get the answers one day and until then I send you all my love and strength. You are so strong ❤️💪 Love you xx

    Liked by 1 person

Leave a comment