Don't let your chronic illness define you

“Don’t let your illness define you.”

It sounds poetic, profound even maybe inspiring. Sadly at times for me it feels like an unreachable goal.

Although I do suffer from several overlapping chronic illnesses I am one of the very lucky ones. I am surrounded by people who make effort to understand, people who love me and want to boost me up. Some have taken a little while to come around but all and all I don’t have the struggle that so many with an invisible illness do in having loved ones not believe it is as debilitating as it can be. I empathize though; it must be hard to see me one week doing Pilates or maybe dressed and put together and off for lunch with friends then another week exhausted and symptomatic by seemingly nothing. I know it has to be hard for someone else to understand because it is hard for me sometimes and I am the one who feels it. I do believe it is a roller-coaster for all involved.

Now I am not saying it’s been all peaches and creme. I talk about The Spoon Theory whenever I can trying to make attempts to encourage friends and family to read and understand as well as sharing it with other ‘spoonies’ as a tool. I have a spoon twibbon on my personal FB page and have posted about it there as well. My husband, who has been amazing through all of this, just read it last week. He had an ‘ah ha’ moment that we are both thankful for, but again I have been sharing this for almost 2 years now. What’s that? You haven’t heard of it… I will share the link at the bottom.

So I have some ideal factors in this chronic illness scenario; married to a loving man who is caring and patient, mother to 4 kids who all have an age appropriate understanding of my health, active duty military means my medical expenses do not burden us financially, friends near and far who are amazing oh and the simple fact that I have a diagnosis. My intent is not meaning to be a downer at all. I have more than my share of things to be thankful for, but even knowing that I was still struggling with that phrase ‘Don’t let your Illness define you’.

I am a wife, but my illness has had an impact on my marriage. I am a mother, but my illness has left me unable to do things I would like to do with my children. My husband and children have all had to see the toll my illness takes on me. I want to visit my mother, but my illness impairs my ability to travel alone. I love to write and would like to be a published author but the reality is my illness does lay the conditions in which I am able to write. I love to workout, my illness determines if I am able to. As much as I am attempting to avoid the woes me I think you get the point. How do you not allow yourself to be defined by something the seeps creepily into every aspect of your life?

The answer actually came from the very same person who posed the statement, a person also going through a life altering struggle. The original comment he made resonated in my mind for a night and day, mind you a night and day where my illness had such a grip on me that I was in bed the whole time. I was in a darker place than normal, frustrated with new symptoms and still angry the old symptoms had not even the common courtesy to bid farewells to make room for the new. My illness is severely lacking in good manners! So I asked him, expecting a vague answer along the lines of ‘I don’t know, I am trying to figure that out too.’ An answer I could be mad at, one that wasn't an answer and could validate my festering need to throw something.

Instead the response I received was poetic, profound and maybe even inspiring. I was surprised to hear a goal within reach.

“Shoot to be defined by your continuing amazing response to what's happening to you.”

Now my response to my situation isn't always something to bring amazement, I wish I were as strong as some imply I am. I will say the urge to throw things subsided again. I cannot control what is happening to me but I can control my reaction to it. Now don’t get me wrong, at some point I am going to share with you that I did in fact throw something and I hope I don’t apologize for it too much. I have earned the right to throw something. However, for now I will focus on my response to what’s happening to me and attempt to do so with some grace.

The Spoon Theory