Thursday 11 October 2018

Why Didn't You Tell Me?
Why I am an open book about my illness here on LOGR, but do not often share my struggles in “real life”

Posted by at 3:32 PM in

"I had no idea! Why didn’t you tell me?"

   

This has been the reaction from a few friends who have recently read my book.

Often it is in those printed words on the pages, or in the snippets that I type out here on this screen, that many of the people in my life first learn of the details of my disease and the difficult and winding path that it has taken me on.

My heart hurts if they've been made to feel left out of my life, or if they believe that I have not trusted them with the uglier side of my illness.

I know I'm not alone in this so on behalf of anyone living with a chronic illness here are a few reasons that you may not be aware of the deeper struggles your sick friends and acquaintances face.

   

The reality is that most times I do not purposefully keep things from you.

I know that there is so much more to me than my headache or the pain in my hands.

I’d rather tell you about the fabulous meal I made with my daughter over the weekend, or the impromptu walk that I took last night with my husband when he arrived home from work, slid his hand into mine, and led me through the falling autumn leaves.

I’d rather chat with you about the local artist I discovered at the gallery downtown, or the latest book I’m reading, or the family trip that we’re planning for the spring.

I’d rather hear about your grandson, or your work day, the flowers you bought for yourself, or the surprise birthday party you are throwing for a friend.

There is so much beauty to share, so many things to discover, that there is no need to fill the precious moments that we have together with the details of how yucky I’ve been feeling or how the new medication I’m on is making me feel a bit manic.

I do not purposefully hide the details of my struggle I just have more interesting things to talk with you about.

    

Time with you is an escape.

When you are in pain everyday, all day, it is nearly impossible to get away from thoughts of your illness. Each moment of the day is spent calculating whether one activity is worth what it will cost you later, debating over how certain foods might affect you today, trying to remember if you took your med before 9am like you know you should otherwise you risk being antsy and up all night, and trying to tackle your to-do list and ignore the fire in your joints, the throbbing in your head,  and the burning in your back.

Spending time with friends, new and old, allows a little bit of a reprieve from those constant calculations and pain management. Time with you can give me a tiny escape from the reality of my disease.

     

I don’t want you to think I’m a whiny complainer.

If I told you about every pain I feel, each tear that I shed, and every dark moment I experience, you wouldn’t want to be around me.

And I wouldn’t blame you! That would be exhausting for you, and for me.

I share the hard, painful, often humbling details of my disease and daily struggle here on the blog knowing that you can click off of this site if you'd rather not know about this stuff. I shared my health journey, and the wavering of my faith, in my book knowing that you had the choice of whether to read or not. And I share my journey, and the lessons I've learned, while I speak at events knowing that you can chose if you actually want to attend.

I share in these ways hoping to be an inspiration and to offer encouragement through my own story. It would not be quite the same if I just laid all my woes in your lap each time we were together. That's not encouraging or inspirational.

   

    

Don’t be afraid to ask.

Sure, I need the escape and tend to shy away from being seen as whiny. But, this does not mean that you can’t ask me how I am doing, or that I won’t sometimes need to lean on you and vent. Once in a while I am so overwhelmed with my own limitations that I will welcome the opportunity to share a bit of what I am going through with you.

Just give me some grace if I chose not to.

Hugs!

Ali