Being confined to a wheelchair it was obvious to those I met that I was not as able-bodied as others. However, people living with chronic pain or illness often don’t look any different from those around them. It is difficult for people to understand the struggle you experience when you don’t look sick or in pain.
My second bout with a rather rare autoimmune disease required that I take heavy doses of prednisone and chemotherapy. This was not an option. The autoimmune disease would have attacked my kidneys and lungs and eventually it would have led to death. When I told people I was on chemotherapy the first thing they said was, “What kind of cancer do you have?” Cancer is a scary word, but by no means the only life threatening reason to have chemotherapy.
This is true of many of us. We experience “invisible illness.” What experiences do we share in this invisible universe?
We may experience guilt, embarrassment, and isolation. We may feel it is our fault that we got sick or that our bodies broke down in some way – as if it’s a personal failing on our part. We live in a culture that worships wellness. It’s okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we’re supposed to get better.
Many of us believe that we have let our family and friends down. Not being as active as our friends may leave us feeling guilty. Many times friends slowly drift away and we become socially isolated.
My husband Charlie and I were lucky enough to have friends and relatives who, knowing we were unable to come to them, visited us regularly – usually bringing fresh baked cookies, casseroles or soups.
It’s difficult to ask for help when you have been self-sufficient all your life. Fortunately, our friends approached us asking, “Can we stop by with a casserole? or “Do you need a ride?” It was much easier to say “yes” or “no” – mostly “yes” - than to ask for help.
We may also experience frustration at the lack of understanding. Family members and friends, even the medical community, may not understand our condition. You may hear, “she’s always complaining,” or “I have a bad back, too.”
The doctor who led me through my first bout with my autoimmune disease moved on and I was forced to choose another primary care physician. The first time I met this new doctor I gave him a brief explanation of my health history and my autoimmune disease. He replied, “I’ve never heard of that before.” The appointments never got any better because he didn’t understand my condition and I lacked confidence in him.
The dilemma. How do we present ourselves to the world? Do we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they are doing? This is a particular dilemma during the holidays and at family gatherings. People suffering from chronic pain or illness will take great care to look their best for everyone, only to be criticized for not pitching in more with the cooking and clean-up. The alternative is to stay in our sweats which can lead to feelings of guilt that we’re letting ourselves go and not doing enough to lift our spirits.
People aren’t deliberately being insensitive. They just don’t understand.
People didn’t realize how weak I was when I was in the midst of doctoring for my autoimmune disease. It was different when I was paralyzed. It was more noticeable that I could not participate fully.
We can’t make people understand, but telling the story of our pain or illness can help others understand. This does not mean incessant complaining, but merely explaining where we are and what we are going through. If we complain too much we become even more invisible. It’s like the boy who cried wolf.
Each of us lives with our own aches, pains, and diseases. We are often stuck with living with them for a lifetime. Knowing others understand can help us alleviate some of the guilt, embarrassment, and frustration. Sometimes friends are not able to deal with painful truths and will shy away from the facts. You cannot change the way others think, but you can change your expectations of them. Hang in there. You are not alone.