I have heard rheumatoid disease referred to as an invisible disease, like many other chronic diseases. It has been classified as an invisible disease because while you may look ok to others and keep going with work and responsibilities, inside you are dealing with pain, fatigue and other ongoing symptoms of the illness.
I was watching Dr. Phil today – ok, at least it’s an entertaining show that helps me pass the time when I feel terrible. His second guest on the show was a woman who had fibromyalgia. The woman described her pain and fatigue. She was concerned for the negative impact her illness was having on her marriage. She said she felt she was not living, only existing.
Then her husband spoke of how her illness was “frustrating” and that when he was on his way home from work and she’s tired and in bed, his thoughts were “oh, no, not again”. Then he said “it really does bring me down and puts me in a bad mood.”
Are you kidding me? But wait, how many of us with these ‘invisible’ diseases are misunderstood by those around us – not just a spouse, but family, friends, employers?
When we were kids, my brother played little league baseball and my dad used to hit grounders to him for practice. I was only six at the time, but well remember my dad telling me to put on the glove and he would hit one to me. The first grounder hit a rock and caught me right in the throat knocking the breath out of me. My dad had a quote – ‘pick up some dirt and rub on it.’ Even at six I didn’t think that would help, but I did try to be tough and keep going.
Even now I find myself doing the same thing – be tough and keep going. However, when you’re talking about a disease, is that really the best thing to do? After five years of struggling to keep up with what I used to do, I have finally (finally) come to the point where I have to set more limits – and, unfortunately, those around me often don’t understand.
We hide the pain and fatigue, we push when we shouldn’t, we pretend things are normal when they are definitely not. Invisible, yes! But – we have the ability to accept or reject the role of invisible. I no longer care about being a superhero. I want to be understood. I want to take better care with how I spend my time … and energy. I want to enjoy more. I want to be an advocate, for myself and others. I want to encourage. I want to understand and accept this new normal. I want to surround myself with professionals who will help me, not frustrate me.
I want to live – not just exist.
Want to join me?