To be honest, I haven't heard this in several years because I now have to take oxygen with me wherever I go and my limp is more pronounced. Years prior, I heard this time and again from family, friends and even people who were waiting in the doctor's offices. It's safe to say that after the first dozen times, I grew agitated at hearing that phrase or its cousin - "You're too young to be that sick."
When the average, everyday person thinks of someone being sick, they think of a person in bed with a variety of symptoms that they can see or hear. Or they imagine an outward symbol of illness such as a cast, wheelchair, a missing limb, or anything that would designate a person as ill. However, that's not usually the case with a disease like Fibro or PsA. They are among a group of illnesses often called invisible illnesses because there are no outward signs that another can pick up only by sight. Before I was officially diagnosed and right after, I could still run or clean the house without much difficulty. My affected joints were mostly the feet and my wrists so I could hide them easily. At this time, my psoriasis wasn't as pronounced either. Only my scalp bared the brunt of my illness although a small spot began to show on my right knee. It took me a long time to accept my limitations even though I looked fine.
Fast forward a few years, my hands began to show the damage with sausage digits which are known to be fingers that are swollen and disjointed to look like little sausage. My feet would feel like they were full of glass so walking became difficult. If I didn't feel like hissing in pain with each step, I would try to place my steps with care. As I became more aware of the limits my body was placing on me, I began to make changes in how I do things. My husband was instrumental in convincing me to accept the things that I could no longer do. He knew that long distances were painful for me and would let me off at the door whenever we would go to the store. People would stare at me as I walked with a limp. They stare more now that I have to carry oxygen or try to do something where my hands would be in plain view.
Before the outward signs were visible, even my family had difficulty believing that I was in as much pain as I really was. If it took me too long to do something, I would often see the looks of disbelief and hear the frustration in their voices. Knowing that I couldn't live up to the average expectations made me feel so small and depressed. Then I would push myself to do more than I needed to do in order to keep the disappointment level down, both for them and for myself. A day or two later, I would be feeling the affects of whatever I had done and enter a seemingly endless cycle. This lasted for years until I could no longer pretend that I was a regular person. Either I was going to push myself too far and end up severely hurt or I was going to have to learn to stand up for myself and respect the limits. I'm still learning how far I can push myself, but I've gotten a little better at saying no whenever I know I'm unable to do something. The disappointment still gets to me though.
There is a fabulous story written by a woman who lives with a chronic illness that explains the way thousands of people live with their invisible illnesses. Christine Miserandino wrote the story, "The Spoon Theory," to explain to her friend how it is for a person with an illness to go through their day. Some of the people that I've shared the story with have read it and finally understood why it's difficult for me to just up and do something. Others read it, think they understand, but continue to believe that if I do this or that, I'll be better. If you'd like to read the story, you can click here.
It's been said that life is what you make it. I'm hoping to make mine a more understanding and practical life filled with positivity and determination. No matter what limitations these damned diseases place on me, I'm still pushing forward. I hope you'll do the same.
Until next time,
Kay
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