Deb's Story:

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     It is hard for me to put into words what living with a chronic illness is like. Often it seems so silent on the outside while on the inside it is raging. Especially for those with a chronic illness that doesn’t show itself physically—or at least in ways that are easily seen by others.

The silent piece means I have to make the daily decision regarding how much I share this with others vs keep it to myself. Do they want to know I was up half the night sick? Do they want to know most of my days are filled with physical pain? I have to make the choice to live with some sense of isolation or let in those around me—knowing some will not get it, will not accept it (since they can’t physically see it harming me) or will not believe it.

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Many days I don’t have the energy to deal with the illness itself (on top of my actual full time job and my family), nor the people who seem like they need convincing of the legitimacy of it all. If I’m not careful, or I’m very worn down, there are (and have been) many days when this becomes discouraging. It becomes a battle I let rage within and define me instead of just a diagnosis or situation happening in my life. It can become the main story line instead of an event in my story.

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For me, the key to living well with a chronic illness has come down to two things: my spirit and my soul. Let me explain: my spirit is the tenacious sense of fight I have within me; I daily have to choose to pour that tenacity towards fighting to stay positive and not let this disease define me. On a bad day (lots of bad days), my spirit can get lost in the “nevers” or “if only” trap - “I’ll never feel healthy again” or “if only I …”. These rarely take me anywhere healthy.

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The bigger piece is my soul—asking and daily reminding myself who holds my soul—who fights for me, who cares for me, who loves me. For me, that is God. God, my Father, who isn’t disappointed in me when I have to rest a lot, who says He loves me all the same regardless what I get done in a day, who cares for me and does not leave me alone in my struggle.

 

To be honest: It took me a long time to stop being angry at God about this whole ordeal. Some people struggle with, “How could God let this happen?” My struggle wasn’t that it happened (because this is life in the broken world we live in), my struggle was why wouldn’t He make it better—when I know He is fully capable of that and infinitely more? It wasn’t my unbelief in Him; it was my full belief in Him that made this so difficult. Doesn’t he want me spending time on better things? Doesn’t He know all the things I could do if I didn’t have to deal with this?

But days of struggle turned to months, and now months have turned to years I learned some ways to manage my symptoms and live fully when I didn’t and don’t feel amazing. With this, I have also gained great perspective on how God often uses struggle to create dependence. Dependence creates reliance. Reliance creates trust. And TRUST is what it’s all about. At the end of the day, if I’m not trusting (which I wasn’t at the beginning) than I’m just self managing; self managers do not need a Savior. Self managers rely on self; God wants me to rely on Him.

Romans 5 reminds me to “...rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts ...”

 

I can’t honestly say that I’ve not rejoiced in this struggle a whole lot; but I do have much greater endurance which has strengthened my character and softened my heart to better care for those who may be hurting around me. It has also given me great hope regarding who God is, what He has done for all of us and what He holds for me in the future. To be honest, I have come to know more of who God is through all of this than I perhaps could have in any other way and for that I am grateful. For that alone, I would not change it.