Waiting: Living with an Undiagnosed Chronic Illness

Elsie LMC,

Hi everyone! How are you? Today I thought I would share with you something I wrote about how it feels to live with an undiagnosed chronic illness. Its one of the many parts that comes along with it: waiting. Waiting to be told what is happening inside you/waiting for it to develop so a name can be put to the excruciating pain you feel. Waiting with nothing to help you get through the hurt..no medicine, not really believing the people who say they believe you. Not knowing if what you have will kill you or your next flare up will leave you crying on a hospital ward. Feeling as invisible as the pain is to those who don’t know you so don’t see you at your worst. I was nervous to write this so I hope it in some small way sheds a light on what it is like to live with it (all undiagnosed chronic pain symptoms are different so the invisible aspect may not apply to all).

Alone

Is how you feel when they cannot give you

A name to explain the pain.

Doubtful looks are cast upon you

As you are made to feel disgusting

Worthless

Insignificant

to name but a few

As you wait and wait and wait.

And endure,

Fearful of the unknown

You feel as if you are slowly but surely dying.

“It is not real as it cannot be seen, might as well be a dream”

You scream

As the pain eats away at you

Nothing to take for it

Nothing to heal it

Crying is not a choice

All tears were used up last night

When you couldn’t move

When you felt like your brain was on fire.

You wait and wait

It doesn’t matter that it’s physical

It doesn’t matter that it can result in mental,

It always does.

Because it is all invisible,

To them.

It doesn’t matter that scars may show within you

They can’t be explained yet.

You wait

For years and years

It seems like a half life

You wait for those words

That will save you or at least help you cope

They will bring a cure if any

Put a safe end to your misery 

“You have:……….and this is what we are going to do”

Until then we wait.

I don’t know what to say now 🙄😂 I feel good for writing this as I want my blog to be of help and I hope in some way it can be, even if it takes a long time to get the words out 🙂

Thank you for reading! 😉💗 have a lovely day! 

58 Comments

  1. Lucy! I relate to this and am so grateful and privileged to have finally received a diagnosis. I am confident that you will do too. I wish you all the best. If you ever need to talk, PLEASE don’t hesitate. You know where I am. 😁
    Your friend,
    Gracie

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    1. Thank you so much!! It gives me so much hope to hear that you got a diagnosis, it’s brilliant news! I really appreciate your kind words, I most definitely will! 😊 Have a great day 💗

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  2. I have friend who is in constant agony, and they don’t know what it is yet, despite so many tests. It is horrible, and I feel for you. Your words are beautiful. I hope you stay strong and have faith 💘 Big hugs 💘💕

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    1. I hope your friend gets the answers they are waiting and their pain can finally be put to an end 💗 thank you for your kind words, I really appreciate it! Have a lovely day 😊💗

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