I think the language we use when talking about our disability or chronic illness is very important, regardless of whether we are talking to our doctors or our friends. As people living with a chronic illness we can control, to an extent, how our lives are perceived. It is a grave responsibility, but one we must take seriously if we wish our society to move forward.
That said, the dynamic for how we speak about disabilities has progressed in recent years because the internet has given us our own platform. But we have not come very far, and we have a long way to go, which brings me to the headline of this column: Would you say you “suffer” living with your chronic illness or disability?
A lot could be unpacked in this post. For example, are disability and chronic illness interchangeable? I think so because that’s how I use them. But maybe that’s not everyone’s cup of tea. Maybe someone who reads this column disagrees and wishes to be called chronically ill, while another person wishes to be called disabled. It’s a personal preference, just as the words that we use to discuss our condition are personal. The preference comes down to the weight that we give the words we choose.
I do not suffer, I live
That is why I do not use the word “suffer” when talking about my condition. To me, “suffer” is such a heavy, negative word. It implies there is no joy to be had in life with my illness. That’s simply not the perspective I have it is not how I wish to be remembered.
I don’t want to be the girl who suffered; I want to be the girl who lived. Do I have pain? Yes. Are some days worse than others? For sure. Not every day is sunshine and rainbows. Sometimes things are just hard — when it rains, it pours. But I don’t think I would have it any other way.
I don’t think I would choose to be normal if I could, because I wouldn’t know how to lead that life. I have been chronically ill since the day I was born. I had no choice and I know no other life. That is why I don’t believe I’m suffering. I believe that I am simply living.
Living in pain every day is no walk in the park, but it’s a reality to which I have grown accustomed. No matter how hard it can be, there are things in life that bring me such joy that I don’t think “suffer” is in my vocabulary, or should be found in a dictionary of terms about my illness.
I live a good life. I live a chronic life.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.