Struggling to remain visible

I studied to be a physiotherapist and after working in clinical practice for a short while, I began lecturing at a local University. As a physiotherapist, the primary function of my job and those of my students and future colleagues, was to ensure that we enable patients to reach their highest level of function in their daily lives. To do this, it was imperative for me to understand what physiological and anatomical issues were going on in their lives that could result in having an influence on their ability to perform daily activities of living. So my job was to understand ability and disability on a very literal level in order to work with patients in achieving the most they could out of their lives.

Generally, we all see a disabled person as someone who physically shows signs of not being "normal" or not looking like what the world considers an able bodied individual. Someone who is in a wheelchair, has visible signs of downs syndrome...that is commonly accepted as a disabled person; someone who needs special accommodation to be a part of society, right? Are you sure?

The world health organisation implemented the international classification of functioning, disability and health in 2001. Since then, all health professionals have a standardised framework for measuring a person's level of functional ability. This framework takes into account the interaction of environment, society and the body, or physiological impariments. It stands to reason then that it should not be difficult for a health professional to determine whether or not someone is disabled, right? It's been 14 years, and yet, this is not the case. Those, like me, who have an invisible disability are not easily accepted as having any disability at all. We fight for accommodation in the workplace, government or insurance support offered to disabled individuals, and generally, acceptance of the fact that we do in fact have a physiological impairment that has severely impacted on our lives.
I wonder about this and about why we sit with this problem. Is it because we, as a society, cannot move past the fact that normal is determined by outward appearances? Is it because chronic pain isn't recognised as something that a person can't control? Could it be that we, as those who have these invisible disabilities, are hindering our own cause by hiding the difficulty we have in performing basic tasks? If I were walking around with outward signs of what I live with daily, a gaping, open, festering wound on my my face, would I be treated differently from what I am now? The short answer, yes. If I were walking around with my arm in a sling, would you expect me to carry heavy boxes? No. But if I had a chronic pain condition, like the millions who have Fibromyalgia, where the pain could be the same or worse than that of one with a broken arm, would you expect them to carry heavy boxes and be irritated if they said they could not? More often than not, Yes.

So maybe we need to stop hiding behind the facade of normality. Stop hiding the realities of our invisible disabilities for the sake of our colleagues and acquaintances' comfort levels.

I have difficulty doing what I was able to in the past, before TN. I can't open my front door when someone knocks because the wind generated by that action causes ridiculous levels of pain. There are many days where I cannot shower because doing so is akin to standing under a live electrical wire in a puddle of water while someone holds those wires to my face. There are times when I am unable to answer the phone because just saying hello is too painful. There are weeks where I am unable to go to work because I can't even keep water down, or walk because the action of swallowing is so painful that I throw up and walking causes a vibration in the body that sends me into screaming fits of excruciating pain. I am no longer able to work two consecutive days without knowing that it will take at least 4 days to recover. I am unable to speak continuously for more than an hour (which is required by my job) without becoming severely fatigued or experiencing a lot of pain. There is no medication that eases this pain for me (for many other TN warriors, some medication works, but only for a while). There is no cure for TN. It is not terminal, but it it has a lifelong influence on your life and a huge impact that only worsens as the disease progresses.

Is it pretty? NO. Do I want others to feel uncomfortable? NO. Do I want others to feel sorry for me? NO. Do I receive the same acceptance of those with visible disabilities? NO. Will I every get better? NO. Does that matter to others? Well....... I guess that is up to us.

It is up to those of us with invisible disabilities to break the silence. We need to stop tip-toeing around issues that have these severe influences on our basic ability to function in the world we live in simply so that we do not make others uncomfortable. Once we move out of that zone of comfort, that is when change will begin to take place. That is when we can start affecting enough change for organisations to be held accountable for passive aggressive management of employees with invisible illnesses. Change in social benefits and insurance companies policies for who deserves compensation and who doesn't cannot begin before we move out of that zone of comfort.

Perhaps I'm living in a dream world, perhaps I'm not. What I do know is that I will start shouting from the rooftops if I must, I will break MY silence. I refuse to be invisible. I am not invisible and neither is my struggle. I deserve to be heard. I deserve to be seen. My family deserves the support that any family who take on the role of carer should get.

It may be a struggle, but I will struggle to be visible for as long as it takes.

May the (invisible) elephant on your face be gentle today.



There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader