What You Don't See About Living with FND

Living with a chronic invisible illness is both a blessing and a curse. I live with a condition called FND, which remains hidden. One of the evils of such a condition is everything which you don’t see about living with the everyday hidden struggles.

The Blessing of Living With An Invisible Illness

The blessing of such conditions lies in the notion that the illness, and it’s resulting limitations do not precede us. And allows us to choose with whom to confide in, and when and how. Illness and it’s resulting limitations remaining a well-kept secret. A secret that does not define us or how others perceive us; and not limited by popular stereotypes or sweeping generalisations.

When chronic illness remains invisible, people do not hold lower expectations of us, that many whose conditions are visible endure. It can be a blessing that even when feeling awful, others often don’t notice. Makeup can help hide the tired bags under the eyes and conceal the other visible effects of chronic illness. A fake smile can be painted to trick those who don’t know us well or the struggles we are forced to endure always.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

The invisibility of chronic illness allows us the opportunity to blend into the ranks of ‘normality.’ Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well.

"Those living with such invisible chronic illnesses inherit a magical cloak that will enable us to be like everyone else. It allows us to act and fake at being well." Share on X

But It’s Merely An Act: A Performance To Fool

But it is just that – an act. A performance that we regularly execute to make everyone else believe everything is fine. In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness and its accompanying symptoms supersede everything else, and this performance becomes difficult to sustain. And the magical cloak slips revealing the struggles that were once exquisitely hidden.

"In truth, every day is a fight, a constant battle, trying to keep that smile painted on our face. But often, the demands of chronic illness supersede everything else, and this performance becomes difficult to sustain." Share on X

One of the most frustrating curses of living with an invisible chronic illness is just that – concealed to the outside world. When we do share our experiences of the suffering and pain, it is often downplayed, or dismissed by those listening. Others glance at our young, healthy-appearing bodies and the mask that we have had years perfecting, and exclaim “But you look so good!” And it is frustrating when others continuously think that we cope with living with a chronic illness so well, not realising how heavy the demands of it all is every day.

It sounds much like a compliment. But for those of us living with a chronic illness, it is a statement of disbelief and scepticism. But what the outside world sees; what we choose to let others see is a carefully constructed mask. A mask that allows us to traverse amongst the able-bodied world that exists outside. And to pass as ‘normal’ and healthy and having to avoid defending my diagnosis to prospective sceptics.

• 

• 

A curse of living with such an illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day. The inability for others to bear witness to all of the ways FND affects every facet of my life. It’s the invisible battles as well as others unable to see or understand the effect they have only adds to the loneliness that already permeates my already microscopic world.

"A curse of living with an invisible illness and one of constant frustration is the inability for others to witness the fight I am forced to battle every day." Share on X

What You Don’t See (Or Don’t Choose to See)

What you don’t see is that I am faking being well; faking health to preserve my dignity, energy and ability to accomplish whatever it is I’m doing before my legs fail me and I collapse.

You don’t know the effort it takes to fake at being well. And although faking is difficult, it is often easier than exposing the pain that exists, and then having to use precious and already limited energy to defend my permanent state of being unwell.

What you don’t see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain. The pain that I attempt to overlook when among society.

"What you don't see is the grimaces I make when in a safe place. A place where I feel comfortable in removing the mask I wear in public, and I can allow myself to acknowledge the unrelenting, debilitating pain." Share on X

You Don’t See the Fear and Anxiety That Endures Because of FND

What you don’t see is the overwhelming fear that encroaches over every aspect of my life. The anxiety that this condition will continue to worsen. The concern that the list of limitations that already exist will continue to get longer; and the number of losses increasing exponentially. The underlying fear that illness will become the sole existence of my life. And the fear that I will end up being all alone in this world.

What you don’t see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone. You don’t see the self-doubt that always exists; continually doubting what I am capable of and overanalysing and questioning every decision made. I often begin to overestimate the limitations that now prevails due to FND, regularly convincing myself that I cannot do something or handle going somewhere because of the disabling symptoms that exist because of it.

"What you don't see is the anxiety and fear that begins to incite when having to leave the house. The fear of the potential that a flare-up of symptoms will suddenly appear when outside of our comfort zone." Share on X

You Don’t See The Enduring Impact of FND

You don’t see the excruciating pain that greets me in the morning as I wake after a restless night of painsomnia. Or the number of times it takes for me to even get out of bed in the morning. You don’t see as the weakness in my legs prevails, refusing to cooperate or bear my body weight. You don’t observe the nights my body contorts from unrelenting and disabling pain that radiates throughout my legs. Pain that often keeps me awake hours into the fledgeling mornings.

You don’t see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body. Or the days spent crying or feeling anger at all the things I can longer do and everything I have lost as an individual.

"You don't see me as I cry in bed, the days and nights with arm-in-mouth trying not to scream from the all-consuming pain that continues to ravage my entire body." Share on X

What you don’t see is the constant dizziness and vertigo that consumes my entire life. Nor can you see the visual disturbances that make it incredibly difficult to be able to focus on, or trust anything that I see in my field of vision.

What you don’t see is the incredible loneliness that I feel because of this condition. The friends that I have lost along my journey of trying to fit into a world that I seemingly do not belong. You do not bear witness of the challenge in making new friends or the difficulties in maintaining friendships because I am primarily housebound.

You don’t witness the anguish and frustration of after gaining a much-worked for a degree; I am not able to work due to the disabling symptoms that accompany FND. It hurts knowing that when you look at me, you wish that you didn’t have to work either. Or the thought that you may think that I am exaggerating and only playing hooky.

You Don’t See the Struggles and Impact of The Symptoms of FND Can Have

You do not witness the unimaginable struggle of walking or standing in a queue while my legs are severely trembling. The trembling so relentless that it is the only thing my mind can focus on and nothing else. You do not see the unimaginable anxiety that courses through my mind that my legs will suddenly give way, leaving me collapsed in a heap on the floor. You cannot see the images that flood my head of the many times it has happened before. And you cannot know the fear it creates about going out at all, or how it easy it becomes to prevent certain places or situations to avoid it from happening again.

You don’t see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop.

"You don't see the hefty payback for every expansion of effort and energy undertaken. The price we are forced to pay in the form of an enduring flare after having a little fun, and not listening when our bodies are screaming stop." Share on X

You don’t see the pill I am forced to count out each week, or the side effects I have to plan my life around. Nor can you see the ongoing pain. Or depression. The endeavour to remain resilient in the face of all of the struggles.

• 

• 

The Lessons Learnt When Battling An Invisible Fight

These are only some of the struggles faced by someone living with an invisible condition such as FND. Trust me; there are so many more. And as I continue to battle and wrestle with the enduring effects of this current flare, I begin to feel more of the frustrations because of it’s lack of visibility and the lack of understanding of the impact they have on my life.

Fighting a battle that is not recognised by anyone other than myself has taught me an invaluable lesson. It has taught me that no matter how someone looks or acts, you never know what’s happening in their lives.

So be kind, for everyone you meet is fighting a battle you know nothing about, or even understand.

But perhaps it is also an important lesson to open up more and articulate to others about my experiences and struggles of living with an invisible illness. To help people, and especially those closest to me the toll it can take on every area of my life.

Perhaps such battles remain invisible because we are often too reluctant to voice them.