Being a Prisoner to Chronic Illness

Loneliness. Isolation. Solitude.  Three words that I would describe life with a neurological disorder, excluding words associated with the symptoms that accompany said condition.

Having experienced symptoms related to the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years and perhaps one of the reasons it remains my favourite film to this day.

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Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone. I have been bullied by so-called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

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It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you politely decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition.

We desperately want to be included in the goings of our social groups and invited to events even if we aren’t always able to attend. Our anthem song slowly becomes ‘All By Myself’, and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

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I am limited so much by my condition; the dizziness so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

Also during the very first cruise, due to the severity of my symptoms at that time, much of the holiday was spent cooped up in our cabin. Unable to even get out once outside of the ship to enjoy the surroundings and activities that the beautiful countries such as Italy had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer.  As much as I would like to get out of my ‘prison’ cell and go out and participate fully in life, it is incredibly difficult.  In everyday life, it feels as though I am continually being held hostage by the pain, dizziness, and fatigue as well as the myriad of other symptoms that I experience because of this neurological condition.

At other times, it is not the want to go out or being held hostage by symptoms of chronic illness that keeps me prisoner but rather the lack of opportunity.

Others may assume that I will be forced to decline the invitation due to ill health, or I am merely forgotten, but whatever the reason I’m once again excluded, ostracised. Even in the darkest times, and after experiencing the extreme depths of loneliness and isolation, I crave the company of others, at least the companionship of others who I don’t live with and already regularly see!

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You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded from, which little by little chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations as after being stuck inside the house for so long it seems that you have forgotten how to converse!

Amidst the constant solitude, we are instead forced to find companionship amongst our favourite books. Whenever I reread ‘Little Women’, a book that I read for the first time as a child it is like saying hello again to an old friend. Failing that and perhaps on some of our worst days, then it is our favourite TV shows and those that portray our favourite TV and literature characters that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

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Social media and the vast community that exists of fellow warriors, also living with long-term health conditions helps with the loneliness and isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through as they experience it to can bring welcome light into the darkness, and at last making, you feel less alone in the world especially when living with a rare or complex disorder like me.

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It is relationships like these which help loosen the shackles and somewhat releases you from the prison that living with a chronic illness has built.

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness, isolation and solitude is a regular part of your life with chronic illness.  But remember that you are not alone and feel free to comment below, or even email me or connect with me on social media (links at the top of the page).

 

 

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22 thoughts on “Being a Prisoner to Chronic Illness

  1. Doing social different is something I’ve had to do to accommodate my symptoms. I understand how lonely that can sometimes be but I’ve also got to the point of recognising if I don’t moderate it the bodily impacts are too great. For me, it has been about finding what I can cope with and sticking to it. It’s my new normal and there’s nothing wrong with different.

  2. I too feel like a prisoner to my health. I often look forward to any moment of escape. My husband and I go for a walk every Saturday morning when I am able to (or even just a drive) and looking forward to that helps me get through the harder parts of the week. I know this is really tough ❤️

  3. It’s hard to read such truths in which we live.
    I feel like s prisoner to my illnrsses just like you.
    My friends are my support groups and the very few family members that remain. All the other friends are long gone with the exception of a few at social medias reach.
    This is a lonely life, but the words in your reading said something to the effect of learning to love our small worlds – made sense.
    If I think about it, my word is small now, but I don’t have to deal with any of the hustle and hurry chaotic world. I can do as I feel and it’s just too darn bad if other people don’t understand.
    And on the very few good days- I just might stick my toes in the shark pool of the broader world. I might have someone take me on an outing. That then will be my choice. I know I will pay in pain for days upon days following, but it St least would have been MY CHOICE!
    Gentle hugs to everyone living in our shoes. It’s sn extremely hard life, and we are amazing and strong. We got this.

  4. Sometimes I do feel like this but I am trying every day to change my perspective. (It’s hard!!) i don’t want to feel like a prisoner so I am trying to accept a new reality and be okay with my “can dos”. Hate the bullying you have experienced! Bullying is my BIGGEST pet peeve.
    In this smaller world I have met so many cool people & feel I am almost blessed to have an attitude of gratitude because when I do go out… I appreciate every single second!!! Keep on keeping on friend! Xoxo

  5. Great share and thanks for sharing. I have MS and can relate but youre never alone. This holiday season might be the hardest and most painful i have felt. You’re in my prayers and all the best for the new year!

  6. My heart goes out to you. It can be so difficult! I have fibromyalgia and CFS. I’m grateful that I can get out once in a while. I can relate to seeing pictures on FB. I feel left out when I see them and feel like I’m back in high school!

    • Thank you for words. I a truly sorry that this is something that affects you also. I really hope that you find something that helps and connects you with others. Wishing you all the best xxx

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