Saturday, February 28, 2015

Weak and Lazy

"My family doesn't believe I'm sick. They tell me I'm just weak and lazy. They think I do this to get attention. I wish someone would understand." A young woman posted this on Facebook today. Hundreds of people with chronic illnesses, especially women, post a variation on this them every day. If we are really honest with ourselves. we probably had similar thoughts until we moved from the land of the healthy to the land of the sick. Maybe we shouldn't judge the healthy folks so harshly!

Healthy folks need to have a reason for our condition. They need a reason so they can reassure themselves that what happened to us will not happen to them. One of the ways they do this is denial. In this case, denial says, "There is nothing wrong with her. She has a character flaw. She's using this as an excuse to slack off and not carry her weight in this family or society. Even if she does have something, her character is too weak for her to fight it. She should just suck it up, put on her big girl panties and soldier on."

We can't control what they think or say. What we can choose our reaction. Animals act on instinct. Humans get to choose. Why waste precious energy explaining until we are blue in the face when it won't change a thing? Everyone ends up exhausted and irritable. Nothing changes. We can choose to use our precious energy in self-care instead.

Sunday, February 15, 2015

Chronic illness and aging erode identity. We can't do a lot of what we used to do and we can't be who we used to be in relationships with others. We find ourselves grieving for who we used to be. The only way out is to go through that grieving process. It's like we lost someone we love, but that someone is us and part of us is still here grieving. Once we recognize that we are grieving, we have taken the first step to healing.

Sunday, February 8, 2015

Invisible Chronic Illness at Church Today

I am a church musician. I always hang out before and after services to talk with parishioners. After over eight years in this parish, there are lots of people I care about. There are also new people and medium new people. Today I was talking with a lady who uses a walker. I only know her a little bit. She asked what else I do besides work at the church. I gave her the run down and told her that I write. "What do you write about?" she asked. "Chronic illness," I responded. She said, with just a tad bit of arrogance, "What on earth do you know about chronic illness?" I smiled and took a deep breath, "Well, I have systemic lupus erythematosus with major organ involvement. Of course you can't see that by looking at me. I have had kidney failure, bone marrow failure, congestive heart failure, cerebritis and was given up for dead when I was 51. After 4 years on disability I crawled back to the work force. That's when I came here." She sat in stunned silence. That's OK.

I an see her disability because she uses a walker. She cannot see my disability because it is totally inside. Regardless, please know that 1 in 3 Americans have a chronic illness and that most of these illnesses are invisible. Other people do not know about our invisible illnesses and our invisible struggles. We don't know about theirs. But if you put three random folks in a room, one would have an invisible chronic illness.

We are only alone if we don't talk to one another. You think no one understands. He or she thinks no one understands. If you held hands your isolation would be over, at least a little bit.

Michael Finnegan Begin Again

There was a man named Michael Finnegan
He had whiskers on his chinnegan
Wind blew them off but they grew in again
Poor old Michael Finnegan
Begin again

Several women friends in my life are recreating themselves right now. Some are beginning again because they want to. Others are beginning again because of changes that are beyond their control. One is a teacher who is going to run for political office. One is a professor on medical leave. One is an empty-nester in search of both a job and a new vocation. One is a lawyer who wants to move into the non profit arena. Then there's me.

I am two years from retirement. I am preparing to begin again. My work as a teacher, parish music director, and program director for the Lupus Foundation of Florida all bring me great joy. Some will stay after retirement, others will go. My vision for my life requires new skills. I have found myself more passionate about learning than I have been at any other time in my life.

When my "whiskers grow in again" maybe they will be hot pink, five mile orange, and neon green! One thing is certain, they won't be pastel!