A Name: Living with an Undiagnosed Chronic Illness

Hi everyone! How are you? I would like to say a massive thank you for your kind and thoughtful comments on my post Waiting: Living with an Undiagnosed Chronic Illness. It’s wrong to say I’m glad some of you can relate because it’s nothing to be glad about but it’s nice to know I’m not the only one! (I’m not making sense πŸ™ˆπŸ˜‚). The other night I wrote this! (I’ve been getting allot of midnight inspiration lately πŸ˜‚). One of the things we wait for in being undiagnosed is a name to put to our pain. Instead of having to describe symptoms and look like an idiot everytime we are asked what’s wrong. A name would not be taken for granted. A name would put meaning towards all of the hurt. My pain is with me nearly every day in various symptoms and I don’t really let you know that on my  usual posts because I want to keep them happy (my pain does not define who I am, my randomness does! πŸ˜‚) and I also don’t want to sound like I’m wallowing or make people uncomfortable but I know I should write about it more and these posts will hopefully help me feel more at ease in doing so and let others know they are not alone too. I find it easier to write it like this (can it be described as poetry? πŸ€”πŸ˜‚) as it just flows and its not hard to find the words. It’s a post that has a start and no real ending as in a way this signifies what we want in our pain, we know the start and yearn for an ending. 

A name to put to the pain

We would not be thought insane.

We would not fear

As much as you think

The name we hear.

After years of worry

I would surely hurry

Towards a name.

Tears would be of joy

It would not come as a shock

I would not think it an evil ploy

Even if there was less time on the clock.

To some it would be too much

To us it is all we ask.

~

The shock would be of a different kind
To those who have hurt out of the blue.

It would be for feeling a new life.

Freedom whilst still held down.

A name to put to your question

What is wrong?

A name to end suspicion

And being jealous for so long

Of those who have a name.

In all this time

Where our pain has been safe

Our normal.

A name could break us 

Yet we still want it

Because we are strong

And we deserve a name.

What are you without one?

Thank you for reading! πŸ˜‰πŸ’— After writing this I was lost for words…it was like without even knowing it I needed to write it and I felt complete in putting my pen down (which is rare! πŸ˜‚). I hope you are having a lovely summer! 

37 Comments

  1. Beautifully said. I know you’re still suffering with the pain and the pain of the undiagnosed illness, when I was going through trying to figure out what my pain and illnesses were it was in blow after another every time a doctor would say “everything looks normal, I don’t know what’s going on” “go see this type of doctor” for months it went on. However I promise that when you finally put a name with the pain it feels like a weight has been lifted and I have no doubt because you’re still in my prayers that they will diagnose your chronic pain, just like I have hope when I prayed they find a cure for Fibromyalgia. πŸ™‚πŸ’• stay strong✊️
    XOXO Anna

    Liked by 1 person

    1. Thank you so much!! Yes exactly it’s one thing after another. One doctor will want a scan done and then another and a few years down the line they use it against you by saying: you’ve had allot of things done was that necessary. When it wasn’t your choice. That is so lovely of you and I cannot explain how grateful I am, I really appreciate it xxπŸ’—

      Liked by 1 person

      1. I know they try to act like you’re causing all the problems when really it’s just because the have NO IDEA what’s going on. It’s scary to think oh crap my doctor doesn’t even know what’s wrong with me. I remember when I had my first blood work done when I first got sick, nothing showed up and the doctor said I was perfectly healthy and I’m like barely able to hold my head up and look like I could kill over any second and I’m like are you sure about that? πŸ€”
        You’re very welcome, I know it’s scary not knowing it’s also troubling because you wonder if they’ll ever give it a name and if you’ll ever be able to enjoy things like before.

        Liked by 1 person

      2. Yes! Exactly I feel like if people in a medical profession can’t even tell me who will? For people whose job it is to take care of others doctor’s can be incredibly mean and dismissive can’t they? I’m beginning to forget what 10 year old me who didn’t have a clue what pain was like back then before even acted like. Im constantly reminded that I used to have more energy and be more jokey, and it hurts to think I might have changed when I don’t feel like I am personally any different, only stronger πŸ’—xx

        Liked by 1 person

      3. I know. It’s sucks when you start to forget what a pain free life or even a pain free day is like. I just wish I could have a pain free hour, I would take full advantage of that. I also hate having to pace myself, I’m still learning and it still sucks. You’ll get through it. Just remember when the doctor tries to make you feel bad for being sick just think he’s probably just ignorant. πŸ˜ŠπŸ’•

        Liked by 1 person

      4. I’m trying to get better at pacing, I used to just do whatever I could in the time I felt okay as I thought I would end up sick either way and I was silly in thinking that. Doctors think your hanging on their every word so they can treat you like rubbish and get away with it as they our your only hope. My GP is brilliant but my doctor up at the hospital is most definitely ignorant and I get so anxious before visiting him as I am never told anything new and am talked to like dirt. Sorry for going on about it πŸ˜‚ it’s not everyday you get someone to relate to in all of this. So lovely to chat to you πŸ’—xx

        Liked by 1 person

      5. Oh it’s perfectly ok. I understand, it’s hard to find someone to relate to on this subject. I get anxious when I have to see my GP the only 2 doctors I remotely trust are my rheumatologist and my pain management doctor. They are about the only 2 that know what’s really going on with me. I hate having to explain things to doctors who don’t know me or my health issues.

        Liked by 1 person

      6. Yeah it feels like starting all over again when I see a new doctor and have to explain all of my symptoms, they make you look like a hypochondriac and like you enjoy the hospital when I would rather be anywhere but πŸ’—xx

        Liked by 1 person

      7. Exactly! It’s like oh yeah I just love spending my day here, it’s so nice. πŸ™„
        It makes me want to ask them, have you ever been sick? Lol.

        Liked by 1 person

  2. oh so can relate. very beautifully written xx…To have a name of whatever is going on with the body brings some relief. You can then know what your up against and what can be done to help with pain etc. Not knowing is scary as you have no idea no clue with how to treat it. Sometimes though a name brings – just a name. much love to you xx

    Liked by 1 person

    1. Thank you so much for your kind words!! Yes that is it, the pain may not stop when a name comes but it will push doctors and others to be more understanding and you will feel believed for once. More so healing the mental aspects that come along with it than the physical pain itself. Have a lovely day πŸ’—

      Liked by 1 person

  3. Nice poem! The power of labels is interesting. Attaching one word to something much larger suddenly makes it β€œofficial.”

    Liked by 1 person

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