I have a disability
There I said it! Despite the fact that I’ve lived with fibromyalgia for nearly 8 years writing let alone saying the words above is no easy feat. Our society has placed such negative stigma and stereotype around the word that owning this statement has taken me years. Nearly a decade to be exact.
The word disability itself is a source or much debate, spectacle, confusion and frustration. Inwardly and outwardly expressing the fact when the very definition of the word is a source of elusion is just half the battle. The fact that I and so many others look “normal” on the outside makes it an even harder pill to swallow and even harder to truly and fully accept.
By definition a disability is:
is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these, and that substantially affects a person’s life activities. A disability may be present from birth or occur during a person’s lifetime.
The World Health Organization defines it as:
An umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives”
The very definition is complex. So one can only imagine what those of us living with a disability go through mentally, physically, and emotionally when trying to come to terms with the fact that chronic pain, lupus, fibromyalgia (and many others) are not just illnesses or diseases but a true disability. Adding to the complexity is the fact that my impairment of fibromyalgia ebbs and flows. I’m impaired but not quite enough to meet the government standard. My impairment is invisible and on the outside on many days I look completely normal. This fact is the most frustrating part. Those of us with invisible impairments are often unable to get the understanding and compassion that the world or society gives to those with physical- visibleimpairments.
I am by no means saying that I wish I had a visible disability. I am grateful and thankful for what I am able to do and fully understand that fibromyalgia is not by any means the worst illness or disability to have. I can do many many things that many other people are not able to do. But I also cannot do many things. By societal standards my days are not normal. The ebb and flow of my disability make it such that maintaining a standard or normal job isn’t an option. The vacillating nature of my disability means that on many days I can go without a problem and then suddenly for due to no fault of my own I can be rendered bedridden for days or weeks. Every single aspect of my entire being from my thoughts, actions, steps, are impacted all the time by my disability. It consumes my entire existence and there aren’t enough words to describe what life is like. Sometimes I need a cane to walk, sometimes I can run; and then I can’t.
Everyone and anyone living with any disability be it physical, mental, or emotional understands that there is no one way to make everyone fully understand. The stigma in our society is thick and equally frustrating whether someone’s disability can be seen or not.
Personal ownership and understanding is just as complicated for the survivor as it is for the family, friends, and world. But the first step to understanding is acceptance and awareness. Whether you can see my pain or not or feel the effects accepting that no matter what you see me do I am a person living with a disability. People first language helps. Reading helps. Listening helps. Accepting helps.
It’s taken me eight years to accept, admit, and own that I have a disability. This is not bad or good nor is it an excuse. It just is and I am grateful to finally finally be able to say these words to myself and to the world.
Photo credit: Disability Arts Online