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

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    1. Thank you so much for your kind words, I really appreciate your comment. I was worried to write it as I didn’t want to make people feel uncomfortable but I wanted to in some way get across what it feels like. I’m glad I wrote it now 😊 have a lovely day 💗💗

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  4. Elsie, I do not know how strange and terrible it is to live under the shadow of an undiagnosed illness. Those lines made me feel it. I am sorry that this is a part your life but you do come across as such a positive person. That counts. I shall pray that your condition is alleviated. Hugs.

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    1. Thank you so much for your lovely words, I’m glad I in some way could get it across in my writing as it feels like I could write for days and it still wouldn’t make sense. I really appreciate that, thank you so much, have a lovely day 😊💗💗

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    1. Thank you so much for your kind words, I appreciate it!! It’s people who don’t get why you’re not giving up, but you’re not giving up because you know you shouldn’t be in pain. The amount of times I’ve been upset because people have made out they don’t believe me, then I go home and am in pain and they can’t see it, my family keep me strong and make sure that I never give up hope. People don’t get that going to endless hospital appointments and being poked and prodded isn’t fun and i wouldn’t be there if I didn’t want to get better. I was so nervous to write this but I’m happy about it now. Have a lovely day!! 😊💗💗

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