Being A Prisoner to Illness
Loneliness. Isolation. Solitude. Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.
Not fitting in
"Loneliness. Isolation. Solitude. Three words that I would describe life with chronic illness." Share on XHaving experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. 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.
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, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were 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.
The Limiting of Symptoms
It’s difficult living with a neurological condition that affects your perception of the world. 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 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 on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.
Feeling pushed out and neglected because of symptoms of chronic illness
We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘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.
I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody 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.
Prisoner to Chronic Illness
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.
"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." Share on XDuring our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries 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’ and participate fully in life, it is incredibly difficult. It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.
At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.
Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!
Finding Companionship Amongst Solitude
Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.
You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it 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. After being stuck inside the house for so long, it seems that we have forgotten how to converse.
"Netflix is a welcome distraction from the silence and solitude that surround us." Share on X
The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.
It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.
"Social media helps with the loneliness and isolation that chronic illness can bring." Share on XWho 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 and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).
26 Comments
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.
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 ❤️
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.
Beautiful post and oh so true 🙁 I wish that I had the answers. I often overdo it, trying to keep up with my ‘old life’. I am going to reblog this post x
Reblogged this on Tripping Through Treacle and commented:
A brilliant post by Rhiann from ‘My Brain Lesion and Me’ about the isolation and loneliness of chronic illness.
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
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!
Thank you! ❤️
Sending lots of love, I feel you <3
Thank you! Wishing you all the best for the year ahead xxx
Reblogged this on yarn and pencil and commented:
Different condition but similar result. I seem to be managing my loneliness more effectively since I’ve been blogging. I have all of you to thank for that 🙂
Thank you for sharing! All the best xxx
I can completely relate to this. I love your comparison to Belle! Always here if you need to talk. Thanks my fellow chronic illness warrior. Happy New Year xx
Thank you so much! And the offer also goes to you! I hope you are doing well and the rehabilitation course is going well for you! Wishing you all the best xxx
This truly hits home for me. Praying for all! Happy New Year!
Thank you for your kind words! Wishing you all the best for 2018 and beyond! xx
I can relate and have said this to my husband before. Thanks for sharing 🙂
Thank you ever so much for your kind words! All the best xxx
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
You have a knack for saying exactly what I am feeling! Thank you for adequately and eloquently painting a picture of living with a chronic illness.
Thank you so much! It really means a lot. Happy New Year! xxx
I deal with a lot of chronic pain. At 26 years old, I sometimes have to resort to using a walker around the house. When my pain is that bad though I’m not usually getting out of bed. I’ve dealt with pain for 14 years but the last 3 years it has been much, much worse. I’ve definitely felt like a prisoner. Friends have left and I’ve had to give up some activities that I really enjoy. I’ve felt so lonely. I have now become the “over sharer” on Facebook. I’m so lonely & desperate for some interaction that I’m constantly posting on there about even the most mundane things, just to feel like I’m talking to someone. I got a cat a couple of years ago & she’s become my emotional support animal. I taught myself to knit more so that on days when I’m stuck in my recliner, I can still feel productive. I’ve immersed myself into YouTube, watching a bunch of vloggers live their daily lives because I normally can’t do much. It’s actually comforting to watch them live their lives as opposed to being depressing. I’m still learning how to cope, but that’s what I’ve done so far.
I absolutely feel like a prisoner to my own condition, a pin cushion and a prescription medicine test subject. I long to connect with those who truly understand my new reality.
I can completely understand this, people seem to think if you cannot do things then you are not worth having around. I spend much of my life alone with my little dog at home. Without him I think I would go insane I hate that we have to deal with this but I am so thankful for my online friends. I am always around if you ever need to chat
Thank you!!
Rhiann x