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

Randomly musing and missing being part of your life

A good friend recently said something to me that makes perfect sense, but yet, is something I have struggled to accept since becoming ill. People generally stay away from someone with an invisible illness, not because they don't care, but because they feel helpless to help the person they care about.

This makes sense. I know it does. On a purely logical level, I do understand. This is something that I have heard so many in the support groups cry and vent about. Family members who no longer invite you to gatherings, friends who don't invite your kids out to play with theirs, friends/family who no longer visit.

It is so extremely difficult to deal with. I have always been a home-body. Not necessarily someone to go out and party. What I have always done though, is enjoy spending time just being with family and close friends. I miss that. I have had to adjust to being a hermit for most of the week with a maximum of 2 days out of the week where I have to be in the office. Even that has become difficult, with more sick leave these days than before.

I have had colleagues, friends and family all say the words "I wish there was something I could do" to me recently. I do too. I wish there was something I could tell you to do. I wish I knew what would help. BUT, because I don't know what will work, and neither do the very qualified, highly specialised doctors, I do not have a straight answer to that statement. What I do know though, is that 'something' you may wish to do for the chronic pain warrior in your life, is just to be there. Coming to visit, even if it's just sitting and watching tv with me would be awesome. Sending a short message just to say hi, making sure meetings are not unnecessarily long.....those are 'somethings' in my book.

I have slowly, but very surely, felt my friends pull away. Colleagues and friends may be frustrated at my limitations, and I understand that. Just imagine how frustrated I am? How frustrated I am to have to plan my day to make sure that I do not have to brush my teeth too close to having to be in a moving vehicle because the combination would cause too much pain? Imagine how frustrated I am to have to avoid work gatherings that are in a place with too many windows/air conditioning/outside?
I know it must be irritating at times for you too. Irritating to have to hear about my pain all the time. Just imagine how irritating it must be to have absolutely no control over how much pain I may be in, over when an attack will hit.

Think of it this way, if someone had to break their arm today. Would you give them all the manual labour that needs to be done around the office/in the home? Would you tell them to get over it, pray the fracture away, deal with it because it isn't a terminal illness? Tell them to stop wearing a cast/sling to show everyone that their arm was broken? Would you stop being their friend for something that they did not have control over? I have heard statements to my face and behind my back, all to this effect. I don't expect pity, I don't expect my friends and family to be constantly asking me if I'm in pain (I always am). What I do ask for, and I am sure others with TN ask for the same, is for you just to be there. Just understand that this is scary for me too. I feel helpless and without any hope most days, and it would be awesome if you you said the same to me too, because then we could figure it out together.  For now though, unless I make the effort to contact many friends/extended family members, I have had to accept that their absence from my life is something I will have to live with. I just sincerely hope that it is because they don't know how to not be able to fix me. I don't want to think of the alternative, because that is a whole other post. A post about those who no longer want to be in your life because you can no longer help/do for them what you did before.....


To my fellow TN warriors, may the elephant on your face be gentle today, if not, may he go to sleep really, really soon.

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