The Real Chronic Illness Problem – “I’m Fine”

I will be honest, I debated writing this post because I feel that my opinion isn’t popular but I feel like it needs to be said, it needs to be heard.

I am sure it can be confusing when you know someone like me, someone with a chronic illness.  I don’t mean the normal confusing things like, “what is it exactly that you have again?”, because let’s both be honest here, you’re never going to remember all of our diagnoses (yes, there are more than just the one).

The real problem so many of us who live in the world of chronic illness face is one we bring about ourselves.  Let me repeat that, we bring about the real problem we face ourselves.  We have no one to blame but ourselves.  In communities and groups, post after post, it’s all there in black and white.  “They don’t understand”.  Of course you don’t understand, we convince you that “we’re fine”!

How can you even begin to understand what we’re going through when we are constantly trying to convince you that “we’re fine”.  Deep down, if we were brutally honest with ourselves and with you, we’d probably be sobbing, asking for a just a little relief, some semblance of normalcy to our life…but instead what comes out is, “I’m fine”.  Why?  Simple…guilt, pride or shame…take your pick, 99.9% of the time, it’s one of the three.

im-fine-meme

 

I’ll try to make this relatable.  Well, let’s think about it, you don’t usually go into a big spiel about how you hate your job or how your car has broken down or that you argued with your teenager yet again this morning.  Why?  Honestly, you don’t want anyone to know that you argued with your teenager or that your car broke down.  You especially don’t want them to know how much you hate your job.  Mostly, you assume no one wants to hear it.  So you usually answer, “Fine” when someone asks you how you’re doing.  See…we’re not so different.

Just like I don’t go into how my hip-joint just dislodged a bit and I need to go hobble my way to the restroom and see if I can pop it back while wincing as quietly as possible.  No one wants to hear that!  I simply say, “Oh yeah, fine. I just need to use the restroom” and hobble my way to the ladies room, do what I have to do, take some pain medication and semi-hobble back.  Good as new!  Well, good as I can be!

Why don’t I tell the people I am with that my hip is acting up?  Shame, basically it boils down to embarrassment.  There will either be questions or odd looks followed with a smile and shaking of the head up and down.  Neither are pleasant for me and it is just easier to say I have to use the restroom.  I am guilty of this all the time.  I didn’t say I didn’t do it, I said it is the REAL problem those of us with chronic illness face, and we do it to ourselves.

So, what are we supposed to do?  Hell, I don’t know…if I had the answer to that, I’d probably be the next Noble Peace Prize winner, okay maybe not.  What I do know is that compassion never hurt anybody!

Compassion and understanding…for everyone, not just for us Spoonies, I mean why not?  Try using it on everyone, but especially those of us with chronic illness, don’t forget about us!  We fight against ourselves and our own bodies every day.  A Spoonie coming across someone with a little compassion and understanding is like coming across an angel on earth!  It truly is!  Don’t believe me, try it on one of us.  That compassionate act just might brighten someone’s entire week!

As much as I’ve tried to explain, I don’t have any expectation or judgment of anyone who doesn’t understand what it is like to live with chronic illness and chronic pain on a daily basis.  I simply ask for a little compassion and understanding when you see us out and about, that’s all.  Especially give your compassion and understanding to a Spoonie if they’re a loved one.  I know it’s difficult, we can be pains-in-the-asses (it’s the pain talking – pun intended).  Just know that there is more to us than what you see and we hide our pain for many reasons, but ultimately to avoid guilt and shame or to protect our pride.

I know that my existence is quite different from that of someone who is not chronically ill, so if you have any questions, feel free to contact me.  I will be more than happy to share all I can.  I think those of us with chronic illness and pain need to be more open and honest with those who are not.  It would also be nice if the favor was returned!  We are not as fragile as some think we are.  There are a lot who would crumble under the pain we carry daily, that takes a lot of strength!

Lastly, to the people who think that I don’t look or act “sick enough,” I have no apologies for you. I’m doing my absolute best I can in this life – you should too.

 

 

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12 thoughts on “The Real Chronic Illness Problem – “I’m Fine”

  1. I’m so glad that you have such a supportive group of people around you. That is something that makes all the difference in the world for sure.
    I giggled at, “they would be fast asleep if they took what I not long ago took for breakthrough pain” because isn’t that the truth!
    I told my daughter (who is 23) to take ibuprofen and Tylenol for her cramps and she said she didn’t like taking them both because it made her feel funny. It was a struggle not to roll my eyes and laugh. But I know that most would also be curled up in bed under the covers on one of my “good days”.

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  2. I use that expression all the time … however my closest few friends often question me and when I am having a ‘better’ day I have to convince them of it haha but they know when to just let me be when I say I am fine and don’t want to talk about it more. School mums and such I say things like, hasn’t been the best one today, or have been better or a general of ‘back’ is playing up but I am doing my best. I don’t add that they would be fast asleep if they took what I not long ago took for breakthrough pain just so I could get to school to pick the kids up or that I am doing all I can to not pull out my walking stick until a majority of people have left the school or that I am so tired even though I just slept the kat 4-5 hrs. They wouldn’t understand and I don’t usually have the time or energy to explain. The odd time I might add it in IF I know they genuinely care. Otherwise I don’t see any other people except Drs etc and I just tell them the truth. I am fortunate to have an amazing team of Drs and even the receptionists are all great too. I hope it stays that way!!

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  3. Also, unless I have a great rapport with the nurse, I keep my answers short and honest. They write EVERYTHING down. If you say you’re fine or okay. They will use that against you somewhere down the road. I just usually say, I’ve been better. Because that’s true and vague. But yet doesn’t seem like I’m fine or okay.
    The one place you want to jump over any wall you put up, is the doctor’s office. Spill the beans, all of it. Maybe this should be a post of its own. You’ve inspired me so much, I could go on (boring everyone for at least a half an hour) lol

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  4. I feel you 23marie. I am usually “stormy” but I hate showing that side when I am. So I half-smile (because that’s all I can muster) and try to pull off a partly cloudy or overcast day.

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  5. Good topic! I use to get frustrated every time I went to medical appointments. The nurse always asked how I was feeling. I was there because I was sick so I would say “partly cloudy” or some other weather description. Now I just say okay even though, with chronic illnesses that also involve chronic pain I am never okaymore fine. It is usually stormy.

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  6. I’m so glad you have such great support!
    I see so many who unfortunately are not as blessed as we are.
    Even with the tremendous support I receive, I tend to push myself because I feel guilty for not being able to do all I used to.

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  7. I don’t feel guilt or shame, I’m married to a wonderful husband who helps me with things that are hard for me to do around the house & I have two grown children, with children of their own. (Thank God I don’t have to work or try to raise little children! ) they know my disease & probably know when I say I’m fine, because I don’t want to burden them with something they have no control over. They would feel bad, & worry & I’ll feel bad & none of us can change anything. Keep up the wonderful work you do Tina, I look forward to your thoughts & insights 👍

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  8. Sorry, me again. Just watched the old mule video. Made me cry! What a great message, but what poopy humans!!!!!

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  9. Terrific blog, Tina–I always look forward to your posts.

    Is your email listed anywhere? I’d like to forward something to you from Dr. David Hanscom. It’s an invitation to a free virtual seminar. He’s the author of Back in Control (double meaning with the word “back”).
    I subscribe to his emails, which I find very interesting.

    I thought you might be interested in signing up for the “email seminar”–I just did.

    And boy, oh boy–you got it right–a little compassion goes a long way! sigh

    Hope you’re almost settled into your beautiful home.

    Jan
    jankeltner@gmail.com

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