How Hard Is It?

Do you ever get angry sometimes  because it is so hard to quantify how hard it is to live life with an invisible disease? Or maybe it is just seems that there is really no word that shares all that I feel – the pain, the fatigue, the inability to do things, and the all around living with pain 24/7 and 365 days of the year. Perhaps a word would not do any way because people who are not suffering like this may not be able to comprehend it until they actually feel it? Granted we know that will probably (and hopefully) not happen to them but it does bring an interesting pictures to our world.

We live in a world that I would say parallel’s the normal world. Our world is a world where we as invisible disease sufferers (spoonies/squeakers) see each other, understand each other, and speak words that we understand. As compared to the real world that parallels us…they do not understand our words or our pain…mostly because “you look fine?” ,”you do not look sick”, “where does it hurt”, “how can you wake up every day in pain?”, and many other thoughts!

For me, sometimes when I run into this “interference” I get discouraged, I feel alone, and I feel angry. After spending some time this morning reading in my Bible….I realized that I have to pick myself up off the ground when I get discouraged. I have to clean off the dirt on my pants and keep moving! The world may not understand, but I know out there…in MY world there are people who do get me. And I am blessed that in the paralleled universe.. there are a few people who try hard to understand too!

I know it is hard to move on, it is hard especially when over and over you have felt beat down because NO ONE UNDERSTANDS! It is something that makes me angry because it is as if..will we ever win this battle? Change….the one BIG word that most people cannot stand but CHANGE…we need CHANGE. The thing is though….change takes time….years, decades…etc. BUT what I find encouraging is that change can happen!!! We have seen it in our country  – for example, women on submarines (OMG!!) and the “dont ask, dont tell” changes. CHANGE CAN HAPPEN ONE VOICE AT A TIME!

Be that one voice! That is my encouragement today..I am one voice, you are one voice! Together we become a louder voice, and louder voice as more people join! We don’t have to be defined by our pain, we can use our pain to define the world and bring change! Is it hard to do? YES! But that is why we do not do it alone! 🙂 Encourage someone today! Open your heart to touch someone else today!

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