Does being labeled ‘Disabled’ accurately reflect the person’s reality?
Since I was first diagnosed with Fibromyalgia and first heard myself referred to as “disabled”, I have never liked the word. That is not to say that I am ashamed of my chronic pain disorder, not in the least, or that I am ashamed to be considered a member of this group of individuals. I simply feel that the word does not accurately reflect my reality. And though I cannot speak for any others who fall in this category, I can speak about how it feels to have this label attached to me, and I am not especially fond of it. I realize that the label “disabled” is a very broad term encompassing many different illnesses, disorders, and other abnormalities that affect one’s ability to function at par with the rest of society. However, I feel that, at least in my specific case, the word does not do the situation justice.
My pain disorder does make me unable to do some things, so the label is actually accurate in the literal sense. I do lack certain abilities because I have a chronic pain disorder: I am limited in my physical energy, my ability to participate in certain activities depending on my pain level, if even at all, and I have cognitive symptoms that affect my memory and my concentration. Next to my physically fit and incredibly active husband, the contrast is stark.
I take twice as long as he does to bring in and put away the groceries because I move slower and can carry less, so I make more trips. It takes me three times as long to mop the floors and do the dishes because I have to take frequent, short breaks. It takes me more time to do the budget or make a grocery list because the cognitive symptoms associated with my Fibromyalgia oftentimes cause me to become easily confused over basic, familiar tasks, or to forget things. Because of these cognitive symptoms, I have begun to systematically double-check every decision I make. This takes a significant amount of extra time and energy to complete my daily activities.
Being labeled ‘Disabled’ highlights limitations and ignore abilities.
Of course, I have not actually timed my per-dish rate of speed compared to my husband’s, but my point is much broader than that. My Fibromyalgia does limit me, and it makes my life more difficult than someone who does not have this disorder, like my husband. However, these limitations are not what I see as being most fundamental to my experiences of living with this disorder. I am limited, I am “dis”, but I am still a strong and capable individual in spite of these challenges. By labeling my experiences with Fibromyalgia as a “dis” ability I feel like my limitations are highlighted and my abilities in spite of them are ignored.
That is not to say that I do not want these challenges I face to be recognized or validated, as they are when one refers to them as a disability. Rather, they should be viewed more as just that―challenges― rather than as lacks. To me, the label “disability” emphasizes my weaknesses and draws attention to what I am not able to do. I lack ability, some sort of ability. To a potential employer, describing myself as disabled draws attention to this inability. And when there are many other fully able applicants, why would one choose the one who lacks? Similarly, when I meet people in social situations when getting to know my peers or classmates, speaking of myself as disabled gives the impression that I am less capable than the rest.
Why does this bother me so much? Because I do lack, as we’ve just gone over. I think it bothers me because this is not what I want people to understand about what it means for me to live with fibromyalgia. Though I do have these disabilities, I do not want to be defined by them, and by labeling me “disabled” I feel that this is what comes to the forefront of people’s minds: what abilities I do not have, rather than my capabilities despite these unique challenges of mine. “Disabled” does not express, or even hint at, the many innovative ways I’ve developed to work with my symptoms and manage my responsibilities regardless of them. I have spent dozens of hours researching the precise nature of the cognitive symptoms of Fibromyalgia, and have found ways to persevere and to be successful even with these challenges. The fact that I get the dishes done and the groceries bought and put away, no matter how long it takes, regardless of the sometimes intense pain and fatigue, speaks to the strength, determination, and endurance I have been forced to develop since being faced with this disorder. I may not be able to do everything, and definitely not at the pace of my more healthy peers, but I am able, in so many ways, even with the struggle that is Fibromyalgia.
To me having Fibromyalgia means that I have developed strengths and other abilities in order to compensate for my weaknesses. It means that I wake up an hour or two before my children so I can address my symptoms before they have to bear witness to my pain. It means that their breakfast may have been prepared the night before, but it is ready for them in the morning, and it is delicious and nutritious. It means that mornings are slow-moving for me, and sometimes I don’t think I can do it, but my daughter always gets to school on time.
It means that I have the determination to ensure that I get things done, no matter what it takes, or how long it takes me to do it. I read my child her bedtime story even though my head is screaming in agony and I can barely keep my eyes open. That I keep food in the fridge and spin out nutritious meals for my family even with the hours of agonizing over the grocery list and the budget. These challenges I face may limit me, but they do not stop me. I may not be able to do it all, but I can still do most of it. I may not be able to do it as quickly or as efficiently as my husband, but I will still find a way to get it done, whatever it is.
Please let me be clear when I say that it is the label that I do not like, and not the disorder itself. Of course, I am not necessarily fond of being in pain every day and having to constantly spend my energy as if it is a non-renewable resource, but I am certainly not ashamed of it. Rather, I am proud of it. I am proud that I am still a great mother to my children, a supportive partner to my husband, and even managed to finish my degree despite my pain and fatigue. This is what it is to be disabled to me: to fight through my unique challenges and to smash my goals in spite of them. This is how I want to be defined, this is how I want to be labeled, and this is what I want people to know about me when they know I have Fibromyalgia. Not that I lack, but that I fight through and head toward success anyway.
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