Isolation - 'The slow erosion of the self'

 

'Some bodies are made to function,

some bodies are made not to function as well from the beginning.

and some bodies function and decline sooner than society

believes it to be.'

Isolation 

Is a tough thing to be thrown into its more complex than one may think. There are different facets to isolation and many things impact the level of isolation one faces with chronic conditions.

 

Who is around you, your support team which can be made up of family, friends and clinicians. And how much of an active participant you are in your local community, even going out to your favourite Cafe is a form of support in the sense of community and belonging and NDIS in the form of support workers. These things improve quality of life.

 

Sometimes people have loads of supports, and sometimes people have a limitation of supports formal or informal. I myself sit under the minimal of supports and nil community engagement. I have my partner who is now my carer and while I’m so thankful for that, I understand that due to a lack of supports informal and formal impacts my quality of life.

 

Previously I was a disability support worker and i know how important these things are for people living with disability and just as humans as a general. And it is a theme within society that isn't healthy, kids seldom play outside with the kids up the street anymore, neighbours don't check on neighbours anymore, community is slowly diminishing due to technology and this era we live in.

 

I had tried roughly the second year into diagnosis to go to a community yoga session, the experience wasn't nice. I was struggling with my legs, I had to sit and it was really of no fault of the instructor but she said, "Oh I heard what you have is psychosomatic." And to be in a room full of strangers and having to explain what FND was felt embarrassing and the notion of its solely mental health wasn't the best for my confidence. I never returned back to those community groups. I know that they are available but I feel alienated towards my peers now.

 

The lack of understanding itself is isolating, from seeing doctors to explaining every symptom to people. People without the condition will try to understand the best they can and often with good intentions have you tried this or that and the focus is now just on your condition rather than just being a human.

 

Also the condition itself, who here has heard of Functional Neurological Disorder? We have so many conditions well known in the community with awareness campaigns. We know what MS is, we know what CP is, we know what Lupus is and we know what Parkinsons is. But we have no community awareness of what FND is. And that is due to its rich history of conversion and mental health. Yet we know what Bipolar is, anxiety is, depression is, BPD is, Cptsd is these things still hold stigma however they are still topics talked about within our communities and with FND and other chronic illness there seems to be this silence.

 

But the biggest factor of isolation is the condition itself. No longer able to physically go food shopping, now online. Unable to go to a local Cafe, unable to have friends over for a long duration, no longer able to function well enough for outings and gatherings. The noise and excitement used to electrify the body and energise, now in those settings your body is screaming to get out to a quiet spot because it's depleting your energy and cognitive functions by the minute. No longer able to walk around as much as you did. The symptoms are that severe that at times I have to stop doing a simple daily task, so community isn't on the list of hierarchy of needs now.

 

The symptoms themselves are isolating, while my partner helps me as great as he does, he isn't living it physically, he is living it through the lense of a carer. He understands FND he knows when episodes will happen, knows what to do and knows when I can speak and when I can't. So even within the family household there is still a level of isolation apart from my family, a barrier at times. How much can mum do? How much can mum speak or understand us?

 

My world is rather small now, the vicinity I can drive is small, and how much I can do in home and out home is determined by my fatigue levels and symptoms.

 

So how do we accept this level of isolation? We could push beyond our capacities to try to go out more, do more things. From my experience that causes more crashes than it's worth. E.g. going to the doctor means I can't do anything for the rest of the day, so a day out is just a big no.

 

So how can we work with this level of isolation? Read, create, find hobbies, create a routine within the days that seem to melt into each other. We can play little games and write stories with the kids, go to the park up the street or just talk. Taking the time to talk to my loved ones when i can fills that level of isolation and repairs the level of disconnect. Also, in this age of technology helps, online friends, groups so you don't feel so alone.

 

The isolation is felt, always. And for every individual it will impact different. Some people are already house bodies and hermits who don't care so much, others were really social butterflies and now they are not. Some people have loads of formal and informal supports while others do not. Isolation can play a big role into one's mental health, it can be of a massive detriment, for others it's a bit softer.

 

So, ask yourself what is my level of isolation? What can I do about it? Or what routine can i create for myself to instil the human need for community as small as it may be the impacts are large. What can i create within this isolation? How can I use this isolation?