Living with a chronic, invisible illness is awful. This is compounded by the fact that I usually don't look sick. The following paragraphs are from my "book" about living with chronic illness. (It's more of a memoir, really). I wanted to share this picture of disability. This is addressed mostly to people who don't live with a person like me, and they don't really know what it means to have a chronic illness. This is written in past tense, as though I no longer deal with this struggle. But, my autoimmune issues flare up often and I have bad days. I still struggle.
I want to paint a picture for you to understand what it is like to live with chronic illness. I will use my husband as an example.
My husband, Paul, worked for UPS for several years. For quite a while, he was in the position of pre-loader. He put the packages into the trucks. Sometimes he had to load as many as four trucks at one time. The work was fast-paced as well as physically and mentally challenging. It was like a big puzzle that had to be put together every night. When all the boxes were properly loaded he was tired, but felt satisfied in a job well done.
Then, a horrible thing happened. Paul's discs in his back became herniated. He could no longer do his job with the same vigor. And, there was a period of time that he had to take three months off while his back healed. During that time, Paul struggled with feelings of uselessness. He wanted to be able to get out and work.
This kind of situation is hard for a man to deal with. Men were made to work. But, it could have been worse . . .
What if instead of just being stuck in his bed every day (which was hard enough for a hard-working man like Paul) he had to lay on a couch at the delivery center and see boxes and boxes piling up outside of his package cars? What if he had to watch while someone else tried to do his job, but they were just not doing it as well as he could have? Worse yet, what if he had to watch a driver pull away from the bay with the work left undone and boxes strewn all over the floor?
That was my life (in 2014, when I was at my worst). I knew my job description. Mother: makes meals, tickles children, plays catch, washes laundry, does the dishes, makes child do homework (or in my case teaches school), kisses boo boos, keeps the house looking nice. But, I was unable to fulfill my role as mother. Sadly, I had to watch as jobs went undone, finished half-way, or completed once again by my eldest daughter. I had to live in my mess . . . forever seeing that I couldn't do anything to help. I felt useless. I felt like a failure. There was no where to turn my eyes to avoid seeing reminders of my sickness.
That's one picture of disability.
Add to that first picture now (Paul, on the imaginary couch at work, watching the work get done by someone else to a lesser standard than he could have done it) – What if he had gotten up and forced himself to work? What if he had a day where he had less pain and decided, “I would like to work today”? How would he have felt the next day? What would have been the long-term repercussions? One good day of work would be followed by many days in worse pain. This is the reality of what many chronically ill people suffer with day to day. The physical pain is one thing. The mental anguish is another.