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!
Elsie LMC 
It’s definitely scary not knowing what’s going on and why you are feeling a certain way all of a sudden or all your life. I’ve experienced this too, and I hate going to the doctor or hospital and they want to send you away with pills or something. You come back and they give you a different pill to try. Ugh.
Anyways you did an amazing job! Don’t be shy of feel discouraged to share these kind of things with us🌻✨ you will definitely help or inspire someone
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Thank you so much for your kind words!! I really appreciate it. Yeah when it goes on for years you start to think things will never get back to how they used to be and then you realize you can’t even remember what it feels like to be well again. Your words mean so much, I’m glad I wrote it now and hope it does help. Have a lovely day 😊💗💗
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Your words are beautiful Elsie, I am sorry to hear about your undiagnosed chronic illness, but just hang in there ok? someday soon enough it’ll be answered. God is Good 🙏🏼🙏🏼 Have a great weekend 💕💕😊
XX,
Jhae
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Thank you so much for your kind words!! you’ve made my day, it means so much. Same to you 😊💗💗
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Honestly….so, so relatable I don’t even have any words. Thank you for writing this. I’m still going through the waiting part…it’s been years. I only have an idea of what I have, a chronic pain illness that matches every symptom I get. But I still, after all these years, been officially diagnosed and it’s so, so awful. But I’ve got a referral put in from my GP to a pain clinic a few months ago, it’s gonna take even longer to get an appointment because that’s how the NHS works….so more waiting. But thank you so much for writing this, it’s like you’ve put all my emotions in a post xxx
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I hope the pain clinic is able to help you (I totally understand about the long hospital waiting lists, I reckon if they weren’t so long a diagnosis would come quicker + doctors would not be so quick to judge if it were private as they get paid more so the more time they have the harder they work to find what’s wrong) all we can do is stay strong, which is easier said than done but that and family/friends is what gets us through and know that a diagnosis will be found which is scary but what we want, whatever it may be and you will get better 💗 thank you so much for reading!! Stay strong and know that if you ever want to talk, I’m here. Have a lovely day 😊💗
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Thank you😊 I would go private, but we just don’t have the money. Best to stick with the NHS I guess. I’ll try, some days it’s easier to stay strong and some days it’s so, so hard. But I’m gonna keep fighting…what else can I do? It’s ok 🙂
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Same, I had one private appointment and was treated better by the doctors as they are paid allot more to be nice 😂 but I’m with the Irish version of NHS, HSE and you feel like there’s no choice but to wait if there’s ever a hope of getting better but it’s not right how long the waiting times are when you hear of how much money the hospitals get given by the government to treat patients better. I think days when we don’t feel strong mean that deep down we know that the pain we are feeling is not right and should not be happening compared to usually just putting on a smile and getting on with it. I don’t like to admit when I feel down because of it 😂 I need to learn to do that more 💗
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Exactly, the waiting times are horrible, despite all the money they’re getting! Yeah I agree, usually the days when I’m not so strong, all I really think about is ‘Why me?’ and how unfair that I got stuck with this. Don’t be ashamed to admit you’re down because of it! You have every right to be upset, because to put it all in two words…it sucks xx
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Thank you, it’s nice to know to I’m not alone in how I’m feeling. When I hold back feeling down my mum always says she knows I’m down as I must be feeling like I’m going crazy with it all 😂 but when I speak about it, I always feel like one word is too much, like im going on and on about it. she says I must think “why me?” sometimes and I do but am just ashamed to be thinking it half the time as then you get looked at like your wallowing in it when you’re not. It’s annoying how the pain is a big factor, but everything else that comes along with it like the waiting, the missing out and being treated horribly is on top of it all. Sorry for the long messages 😂 it’s surprisingly easy to write about compared to talking 😂 have a lovely day! 💗💗
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Oh my gosh yes, everything you just said I agree with! Sometimes though, when I try and talk about how I feel about it all I just can’t get the right words, or I feel as if I’m making zero sense so I just give up. It’s very hard to find people who understand how difficult life is with the pain, how often it’s there, and how it effects us mentally. Like usually when I talk about it the person’s like ‘oh, I thought u only get the pain once and a while’. Like noooo! It’s all day every day! Even if it isn’t severe, it’s still an annoying weight we have on our shoulders all the time. And exactly, I’m always so scared I look like I’m unappreciative of everything good I have in life. And I do appreciate it all! The pain just…ruins everything I guess. Exactly, it’s like one thing piles on top of the other, and it makes it so much harder
Hahaha it’s ok! It’s pretty hard to talk about this without typing lots! You too😊
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I’m sorry that you’re going through this. It is scary not having the answers to your concerns. It takes a toll not just on you but the members of your family as well. As a parent I can tell you, it is very difficult to see your child go through such things. I pray that you experience a miracle in your life so great that this sickness is miraculously healed and is no more. Keep your head up and keep doing what you love. 🙂 Thanks for sharing.
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Thank you very much for your kind words, they mean so much to me. It is tiring in not only a pain way but in a day to day way and I hate to say we’ve gotten used to it, but will never give up as we know it’s not how things should be. Lots of love ! Have a love great day! 😊💗
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Keep strong. I pray this prayer for you. Hope that’s okay. Heavenly Father, today I bring before you, your daughter Elsie. She is suffering and needs your healing and intervention in her life. We don’t know the cause of her illness. All we know is that she’s suffering. Let your healing power bring restoration and liberation from this illness. Let her enjoy the life you have given her. In Jesus name we pray, believe and receive this miracle. Amen!
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That is so incredibly kind of you! You’ve made me cry. You’re such a lovely person and I cannot thank you enough 💗 xxx
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That is so sweet of you to say. I just believe we all can use an intervention from time to time. I look forward to hearing the great news that you are well again. Stay blessed. I’m sending a big hug your way. 🙂
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That was really touching. Don’t really know what to say because I don’t know how you feel. But I do know that God’s got you. Even if you don’t believe it. Just keep on trusting and believing. You are definitely one of the strongest people I know for sharing that.
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That is so incredibly kind and thoughtful of you!! Thank you so much! Have a lovely day 😊💗
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You’re very welcome 😊
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