I know a lot of us come to this site looking for answers, support, and people who understand what we're going through, and that is wonderful. But, if I'm being honest, I think there are times when our posts can verge on the "woe-is-me" side. Because I've been there too, I wanted to share something from my heart with you all that may help...especially those of you who are new to your disorders.
I don't talk publically about my health issues and chronic pain much because I don't want people's pity and I don't want people to treat me differently. As a result, I have suffered mostly in silence for the last 8 years. But knowing that there are others out there suffering in silence like me compells me to share this post.
It took me YEARS to even begin the grieving process of having chronic illnesses. For years, I refused to allow myself to grieve because I felt that if I did, I was giving up hope. Hope for a diagnosis. Hope for a cure. Hope for answers. Hope for a treatment. And mostly, hope for a return to the way things used to be.
But sitting in a place of denial only led me to anger and bitterness. Once I finally let go and accepted the chronic pain and illnesses that plague me, I realized that acknowledging the illnesses wasn't the same thing as giving up the fight. More importantly, I realized that now more than ever, the fight is crucial. But I finally realized I'd been fighting the wrong battle.
Accepting chronic illness is NOT giving up. Sitting on the sidelines and waiting for your old life to return...THAT is giving up. It's giving up on the idea that there could ever be a life beyond the old "normal". It's giving up on the idea that your life could still have meaning, value, and purpose while being chronically ill.
I am NOT the same person I was 8 years ago. Some days I can function on a level that is somewhat "normal". Other days, I have to use a cane just to walk from the bed to the bathroom. Some days I can move up and down the stairs without issues. Other days, my leg/knee/ankle gives out at the mere attempt to bare weight. Some days I can do my daily chores and go out and about. Other days I cannot even get out of bed.
Chronic pain and chronic illnesses are frequently invisible to the outside world. People look at me when I'm out and about and think there's nothing wrong with me. But those same people don't see me at my worst, because at my worst, even just leaving my bedroom is an accomplishment.
I spent a long time feeling sorry for myself. Feeling angry at my body for betraying me. And refusing to do anything that required assistance (using a cane, using a motorized scooter, etc). But one day I realized that my body is a true hero...a fighter beyond expectation. When most people would lay down and die, my body says "No, we can make it one more day." Day after day. Pain after pain. Flair up after flair up. Loss after loss. My body still says "Let's try one more day." If my body can fight one more day, then so can I!
My legs may not be able to run any more, but I can still walk. My arms may not be strong enough to carry heavy weights any more, but my arms can still hug my children. My back may not be able to lift, but heart can love. My body may not be able to play with my children, but my children can still learn love from their mother.
Chronic illness changes you. But it does NOT define you, unless you let it. Limits require modification, not cessation. Now, instead of refusing to do an activity if it can't be done the "old way" (read: without help), I use whatever tools are available to me and I do the task to the best of my ability that day. This meant swallowing my pride and using a motorized cart at the grocery in front of my 12 year old son the other day. But instead of being embarrassed, he was proud of me for trying my best!
WHO you are isn't defined by WHAT you can do. So be mad. Cry. Yell. Scream. But do not give up. Feel what you need to feel and know that it's ok to feel those things. But process and move on. Because the acceptance you find on the other side of grief will allow you to finally learn how to live again!