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.