We live in a world where seeing is believing.
This can be a challenge, especially when you live with an invisible disease.
My Complex Regional Pain Syndrome (CRPS) has caused very few physical changes, and is mostly characterized by intense, unrelenting pain. My pain is invisible to you, but is very real to me. I am the only person who can quantify it and knows that it’s actually, physically there. It is like air, invisible yet ever present.
Having a condition that people cannot see is truly a curse. People look at us and do not see the disease that we live with. Instead, they look at us and see the same person that we were before we were plagued with this condition. They don’t notice that our smiles no longer touch our eyes. Instead, if you look into our eyes, you can see the pain that resides just below the surface.
Most of my friends know that before I got CRPS, I was very active. Now, I feel like a shadow of the person I use to be. I look in the mirror and barely recognize the person looking back. What I miss now is living life. Spending the last eight months trapped inside the four walls of my room is not living.
Because people cannot see the fire that rages inside of me, they still expect me to behave the same. To do the same things that I used to. They don’t understand that I cannot go to the store or play outside with my son. I cannot even have an intimate relationship with my husband because I am in so much pain.
I know that I’m not the only one that feels this way. I’m a member of several online support groups, and everyone has the same story. We are all our biggest critics, and are hardest on ourselves for not being able to do the things that we were once able to. We feel like we let down those around us. We feel like we let down our children, our spouses, our family, and our friends. The amount of guilt we feel, coupled with the pain that we feel; it is no wonder that CRPS is also known as the “Suicide Disease’.
Many who suffer have not only their life stripped from them, but also their dignity.
I can no longer drive, clean my house, take care of my family, or do many other things that people expect me to be able to do. They don’t understand when I tell them that I cannot. They look at me like I’m lying and exaggerating in order to get out of participating in life.
That is not the case.
Intellectually, I’ve come to terms with this. Emotionally, I still have a ways to go. Of all the people that still expect me to live a normal life, I’m at the top of the list. Every time I feel even the least bit okay, my disease is at the back of my mind. Being able to sit in the living room or at the kitchen table is a big step for me.
Anything outside of the four walls of my bedroom is.
I try to get my fill of normal things I used to take for granted — smelling food being cooked on the stove, sitting on the porch in the sunshine (or the rain), coloring at the table with my son. All surprisingly difficult.
The simplest pleasures of life seem just out of reach for me. Every day seems harder than the last. But the life I want to have, and the life I expect myself to be living, keeps me going.
Amanda Siebe lives in Portland, Oregon with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.