"If You Only Knew Syndrome" - Do You Have It Too?

If you are someone living with a chronic illness that nobody can see, you know what "If You Only Knew Syndrome" is!

When people say things like: "Wow, you are really looking good, things must be going well with you" or "So you must not be ill anymore because you are so active again, and you're looking better", that is when you just want to sarcastically say to those people: "If you only knew!" Right? Sometimes you just want to scream: "Buy a vowel already because you DON'T have a clue!"

But you hold that sort of response inside, biting your tongue so hard that you could draw blood, and smile and say something like: "Thank You! I'm doing pretty good 'today'!" or maybe: "Good thing I don't look like I am feeling inside!" and you just laugh it off. While in the back of your mind you are feeling frustrated, discouraged or you're fighting the urge to shake that person and explain how ignorant they are!!

You have felt those things, or worse, haven't you? Sure you have, all of us who are living with a chronic illness that doesn't show itself on the outside where everyone can see, goes through situations like that, it's inevitable! It's going to happen!

But....do they really mean it as a compliment with some understanding or knowledge of what you're going through?

How could you know this for sure?

You can't honestly think they are saying it to be mean or hurt your feelings can you? No, of course not!

So why is it that we take such offense to those comments?

I know, for myself - and many others, the answer to that question is because we are getting 'sick and tired' of being 'sick and tired' and we long to be "NORMAL" again.

We really don't want to park in those handicapped spaces. I mean, sure they are closer to the door and real convenient. But you feel a bit "guilty" when you get out of your car and people look at you like: "What the heck? That person can walk, there's no reason for them to be parking there" or they have an angry look on their faces as they watch you walk in the store. Ever experience one or both of those?

You also feel 'guilty' because of what you perceive to be your limitations. (e.g. cleaning, vacuuming, sweeping, mopping, making the bed, cooking, etc.) Right?

I remember life before chronic illnesses and pain, and how much I loved it. So when someone looks "down" on me because they 'assume' I don't do anything except sit around all day eating bon-bons and watching soap opera's, it would really upset me to the point of causing much undo stress and my slithering into depression over it. I use to think to myself, "Man, if this is how the rest of my life is going to be, then God....Take me now!!" And I know I'm not the only one who experiences those types of feelings, Am I?

With a chronic illness that is invisible to the eye, all you want is for people to understand how dramatically your live has been altered by what is causing your illness or pain.
You just want "Empathy" not "Sympathy"!!

How do you ever get that "empathy" that you want and need?

Unfortunately, to get the much needed support and sense of understanding from others, you first need to "accept" things as they are and begin your journey into wellness!

You are probably sitting there asking: "What does she mean by that?", aren't you?

Well, can you honestly say you have "accepted" the fact that you are in chronic pain, or you have a chronic illness that only you can see because you feeeel the affected area.
But to those who have never felt the type of pain you have, it is incredibly difficult to describe what or how you're feeling. Should you even try making them try to feel it? No, probably not. Why? Because unless they are diagnosed with the same illness, they will never come close to even imagine the things you go through on a daily basis!
So what then are you to do?

Share some of the things that have helped you "accept" things and move 'forward' in your journey and find that much needed sense of understanding and empathy!

Here are just a few of the things I have done when I sincerely didn't think there was anything that could get me to the next level of the relentless agony I was feeling each and every second of each and every minute of each and every hour of each and every day!!

1. Realized nobody could help me any better than I could, so it was completely up to me how my life would go, and I chose to Live!

2. Learned how to meditate and visualize my journey being in a much happier time and place.

3. Learned how to 'breathe' correctly so I could get the full benefit of all those deep breaths I had been taking.

4. Learned how to 'relax'! This one of the most important things you will ever do for yourself! I invite you to find a way to unwind and enjoy the beauty God provide for you each and every day!


Ok, your turn... =)


Looking forward to reading your tips that has gotten you to where you want to be....And if you aren't where you want to be, ask me, or someone, how you can!


~God Bless~
Coach Marla